Retirement home or LTC - choose wisely, with long-term in mind

Searching for a suitable residence for seniors, especially for those with dementia, is imp

Dolly at my late father's retirement home. She looked after him.
He would run the TV loudly at night.
Get lost in the hallway, lose his room,
wander about in the wee hours in his underwear.

ortant to family members.
Stories, like this one (see below), make me cry.
The family has placed her mother in a for-profit Revera Retirement home.
Now most of the long-term care homes in Ontario are for-profit (500+  out of 600+), retirement homes abound, too. And it is the same situation. Many are run for-profit.
Manta tells us that Revera earns $995,013,120 in annual sales. 
There is money in retirement homes, but shareholder demand profits. This isn't a government-run organization and the wise consumer looks to this. Non-profits don't have spare cash, either.


This mom has dementia. 

LTC

When looking long-term, you must look to the future. Most of us know what dementia looks like at the end of its course. You require highly-trained PSWs, and nursing care.
As a resident of a retirement home, you are a tenant, and governed by the Landlord Tenant Act.
In July 2010, the provincial government passed the Retirement Homes Act, 2010 Long-term care has more regulations, and more specific supports and a higher staff ratio.
Of course, it costs more.

Services in LTC - specialty lifts

This family has found that their mother's increasing dementia symptoms have required more physical and human resources.
Her pension, they tell us is $43,000, isn't going to cover the higher costs with added services in the Retirement Home. No wonder.
People with dementia require vigilance, TLC, and people with specialized training.

Amazing how easy it is for a journalist to confuse what is 'fair' with the actual costs of care.
Mind you, what would my clients do with a pension of $43,000? They'd be in heaven.
The costs of the retirement home have increased, with a pay-for-services policy. And rightly so.

There are differences in staffing, staffing requirements, and government funding for long-term care (LTC) vs. a retirement home. Theoretically, a retirement home gives a senior some freedom and privacy, with minimal support or intervention. Dad began falling, falling with his walker, then falling out of his wheelchair. The stately appearance, and dignity of a retirement home wasn't what he needed when his brain tumour caused him to demonstrate many of the As of dementia. Fist-banging, getting lost in the hallways, communication issues, losing the ability to make the TV or phone function, and losing many executive functions in the thinking part of the brain.

Long-term care

I work with many when I volunteer in LTC, and have found that you need a certain something. They can be challenging clients, and may demonstrate the Four As of Dementia : Agitation, Anxiety, Apathy, Anger, but also Agression, agnosia, anosagnosia, aphasia, and many other symptoms.

There are a great many PSWs who can handle people like this. Well-trained, capable, calm people who have taken courses like ' Gentle Persuasive Approaches in Dementia Care'. 

A need for affordable care

OTTAWA — Carolyn Daniels says a revised fee system for special-care services imposed by the operator of an Ottawa retirement home will force her mother out of her room.

Daniels says her mother has a decent pension, but it will no longer be enough to cover the additional costs of $1,793 a month or $21,526 annually. Daniels’ relationship with the home soured about a month ago, when she found out her mother was going to be hit with new fees for services such as continence toileting or being escorted to the dining room.

Retirement Home

LTC

Those services have been costing $478 a month on top of the $2,774 she pays for accommodation and food. The same care services will rise to $2,271 in September for a total monthly charge of $5,045. She now pays $3,252 in total.

Hospice Palliative Care in Canada

There is much misinformation on this topic.
In the US, you must qualify in order to access services and get financial coverage for palliative care. This is partly why many non-profit hospices exist in North America. Another reason, is that many physicians cannot manage palliative care, do not make house calls, and do not understand chronic pain management.

In Canada, media touts data, such as CBC's Cross Country Checkup's Palliative Care phone-in:  "70% of Canadians cannot access palliative care". Leave it to a journalist unfamiliar with palliative care to lead the public in discussing an issue they do not necessarily understand.

In truth, what is palliative care?

I wrote about his in my book. When I took the Foundations in Palliative Care Course, a year later (delivered by a specialised palliative care nurse), we attempted to define it.

My point is that palliative care is a care plan, specifically designed for the individual patient, and my be delivered at home, in a hospice, or in a hospital. Some Hospice Groups have dedicated beds, some Retirement Homes or Long-term Care place residents in a private room, and can manage the resident. Other cannot as the patient requires a morphine drip (or a CADD pump which automatically delivers morphine to a comatose patient: CADD Pump What, When How and Why).

My late father died in LTC, with regular morphine injections in the last days of his pain.
My late mother died at home,  with oral morphine pills for mild pain management. The only directive for my mother was the doctor visiting her in the morning, the day before she died, to say she was palliative, and that no other treatment would help her. He left, and went home. She never saw him again.

Doing a Life Review is a research-based strategy
for making clients more at peace.

It was a rather late diagnosis, indeed, with a tumour (# 6 or 7 - I forget) pushing up into her lungs and stopping her breathing. She went to emergency, they could do nothing, and they sent her home to die, at her wish. There was no support, no one told us to call non-profit Hospice Muskoka, where we could get advice, help and support. Since then, 2006, we have many more resources, such a Canadian Virtual Hospice.

HOSPICE

I define a hospice as a non-profit organsation, (see more at: Hopsice Ontario), where Transfer Payment agencies coordinate volunteers. There are physical buildings across the province, actual buildings where those who have been determined to be palliative, may go for their last few weeks.
There are some terrific places in the bigger cities, although there are some small communities, such as Bancroft in North Hastings, with small homes, converted to provide a non-hospital setting.

Sandra Winspear, ED Hospice Muskoka
Dedicates a palliative care bed in hospital

Services such as : bereavement counselling, friendly visiting, respite care, Expressive Arts Bereavement Session for children in Muskoka, and for adults (e.g., Carleton Place, Muskoka), transportation, and a whole host of other services. I have volunteered for both Hospice Muskoka and Community Support Lanark County, as a friendly visitor, driver, providing respite care, advocacy for clients. I am a firm believer that the more you learn, the better off you will be. To that end, Hospices provide information such as

Palliative Care Programs  & Grief and Bereavement Programs , for those facing end-of-life concerns.

Most hospices provide a range of services, through an accredited Board of Directors, to spend taxpayers dollars wisely. Unfortunately, funding for such services involves a great deal of paperwork on the part of staff.  Some have broken free of this fettering and rely totally on private funding. (Hospice Cuts Ties With SELHIN)

Palliative Care
This is defined more as a state of treatment, rather than a delivery of services.
Once all treatment options have been discussed and set aside, it is the goal of family and friends to keep a patient comfortable. This may mean that a patient will go to a hospice setting, but I have found with the clients I have known, that family makes arrangement for care in their home.
It does not mean that anything is withheld, e.g., food, pain medications, water.

Pain Management
It does mean that any treatment that provides more pain or that will not provide any comfort is stopped. It does mean that the Pain Management Kit, which a doctor should have provided, or a nurse should have demanded, should be on hand in the home. I had a client with extreme pain, undiagnosed by the nurse, but perceived by myself and the family. In this client's case, we demanded it, and they had a prescription filled for oral morphine, to keep on hand if she had pain in the wee hours of the morning. Unfortunately, the client went into a coma, and a Morphine Patch had to be applied.

In my late mother's case it was chemotherapy, which ultimately killed her after one treatment, and she did not have her second treatment. She had the complication of a blood clot in her leg, where her lymphedema caused painful swelling.


Signs of Pain
Loss of appetite, anxiety, bleeding, constipation, cough, confusion, dehydration, depression, diarrhea, dysphagia, dyspnea, hiccoughing, intolerance of sheets on their legs, sweating, nausea, vomiting, pruritis, insomnia, mouth pain, skin problems, seizures, urinary frequency, weakness.
Watch for changes in expression, a change in behaviour, physical, intellectual, emotional spiritual pain:

• being very quiet or moaning, rocking
• being friendly to now being combative
• from being cheerful to being sad
• eating well then refusing food
• sleeping well to insomnia
• gestures: wringing of the hands, fidgeting with clothes, "pleating", clenching fists, flinging arms about, reflexive jerking, rubbing a body part, rhythmic body movements (banging on a table)
• holding onto a chair for security
• tossing and turning in bed
• changes in body posture: slouching, slow shuffling, tense posture, rapid gait, tense sitting or lying positions

Opioids can make pain worse

Here is an interesting article on pain management.
Opioids—drugs like oxycodone and hydrocodone—have extremely effective analgesic or pain-relieving properties. These medications were once used primarily to treat cancer pain or acute (short-term) pain, such as from injury or surgery. Then in 1995, pain advocacy groups—organizations that receive funding from drug companies—began to issue statements and policies endorsing the use of opioids to treat chronic pain, and downplaying risks such as side effects, dependence, risk of overdose, and addiction. Pharmaceutical companies have since spent (and made) billions marketing and promoting these drugs to healthcare providers and directly to consumers. These efforts to expand the market for opioid painkillers have been very successful in terms of financial gain for drug companies, but not for quality of care or improvement in patients’ lives.


I've been visiting the Pain Clinic in Ottawa with a client. Her pain was not being managed well, as she has complex care requirements.

What is interesting is that for some who develop a tolerance to opioids, they may be on the wrong pain medication in the first place.
My friend, Michele with Spinal Stenosis, has excrutiating pain 24/7, and has been on morphine pills for many years. She is finding that the doses are not sufficient. She needs a pain specialist, and they are not making house calls in long-term care.

For one thing, there is a tolerance that develops. In some cases, the patient can develop Opioid-Induced Hyperalgesia Syndrome.
Opioid-Induced Hyperalgesia Syndrome A heightened sensitivity to pain can be caused by the very medications used to treat chronic pain. Opioid pain medications.

What the Doctor, an anesthesiologist, told me and my client, is that hydromorphone is not in the Canadian standard recommendations for Neuropathic Pain. The destruction of the nerves in some  is similar to cancer pain. Hydromorphone in the body prevents the uptake of cell information about pain messages.  However, eventually, the Hydromorphone goes around the back door of the cell, and adds receptors, which tell the patient s/he is in pain. This is pain tolerance, in many patients.

 Each tablet for oral administration contains 8 mg Hydromorphone hydrochloride. In addition, the tablets contain the following inactive ingredients: lactose anhydrous, magnesium stearate, microcrystalline cellulose and silicon dioxide.

Methadone is a drug that works well for neuropathic pain. Yet, myths abound. There are fears, but this is a drug that provides pain relief.

Pharmacological management of chronic neuropathic pain ...

www.ncbi.nlm.nih.gov/pmc/articles/PMC2670721

Pharmacological management of chronic neuropathic pain – Consensus statement and guidelines from the Canadian Pain Society

FIRST-LINE ANALGESICS:
 Tricyclic antidepressants, Anticonvulsants
 SECOND-LINE ANALGESICS:
Serotonin noradrenaline reuptake inhibitors, Topical lidocaine
 THIRD-LINE ANALGESICS:
Tramadol, Opioid analgesics.
FOURTH-LINE ANALGESICS:
Cannabinoids, Methadone, Selective serotonin reuptake inhibitors (SSRI), Other anticonvulsants.
 ~~~~~~~~~~~~~
Opioids, also known as narcotics, are a class of medications used to control pain. They are the most effective pain medications. Examples of frequently used drugs are oxycodone, morphine, codeine and fentanyl. As a class, opiods have a high potential for dependence and addiction. 

One in 12 patients readmitted to Canadian hospitals within 30 days

One in 12 patients readmitted to Canadian hospitals within 30 days

Study examines who is returning and why

Download the report: All-Cause Readmission to Acute Care and Return to the Emergency Department

June 14, 2012—Soon after their discharge from hospital, more than 180,000 Canadians were readmitted to acute care in 2010, reveals a study from the Canadian Institute for Health Information (CIHI). In those jurisdictions where detailed emergency department (ED) data was available—Alberta, Ontario and Yukon—nearly 1 in 10 acute care patients returned to the ED within seven days of hospital discharge. The study, All-Cause Readmission to Acute Care and Return to the Emergency Department, included more than 2.1 million hospitalizations across the country. It looked at surgical, medical, pediatric and obstetric patients to better understand who returned to acute care after discharge and for what clinical reason.

It's Volunteer Recognition time of year!

What a blessing it is to help others cope with frailty, transportation, disability or loneliness.

This is my supervising office: Community Home Support Lanark County. There are many such groups across this province. We are part Hospice, part footcare services, friendly visitors, but most importantly, we are the eyes on the individuals in the community. Those who may need someone to watch out for them. 

Some individuals are house-bound, or dependent upon a wheelchair or walker. Others do not have a loved one to accompany them to a medical appointment. Part of my work is to take notes for those who are seeking medical assistance with a chronic condition, or a new condition. 

We met at the office, with a catered event (hooray Two Guys for Lunch!), and had a chance to meet the other volunteers who work with people in our community. These are direct services. These are people we reach by actually touching them, no OCCUPY stuff here, by sharing our time, energy, or humanity. It doesn't take much.

From CHSLC Volunteer Reception

 Hubby does the Meals on Wheels program. He helps dispatch and/or deliver hot meals to our loved ones. And they are all loved.

Visiting someone, to bring them a hot meal, is important, as we are the link between the individual and the community. We have the opportunity to ensure that the client is healthy and well.

What always mystifies me is that the people employed to do this work, have worked hard to reward and recognize those of us who volunteer. This adds to their workload, when, indeed, I feel we are trying to ameliorate it!

From CHSLC Volunteer Reception

This is my Thank You to those who work with our frail seniors, and those who are disabled and limited by their circumstances or health.

From the album:  CHSLC Volunteer Reception