Advocacy

* Take notes or keep a journal for reference.

* For better results, try to use a rational and unemotional manner.

* Approach the person closest to the problem first. If unresolved, go up the ladder.

* Ask questions, explore options or advance arguments that have merit.

* Ask why, or by what authority something is being done.

* Be fearless and use all legal means to achieve your goal.

* Use websites, friends in health-care professions and any resources you can think of.

* Do not be deterred.

* Do not be intimidated.

* Review all paperwork carefully.

* Be your parents' eyes and ears.

* Don't let things go as recovery from problems can be long and hard.

* Don't be pressured into signing do-not-resuscitate orders. Decide later.

Long-term-care homes:

* Regulated by provincial legislation. * Must meet specific standards.

* Responsible for monitoring and meeting your parent's ongoing care needs.

* Government inspects standards of care, fees, management and staffing.

* You have a right to know if a home has withheld approval in taking your parent, and why.

* Once approved, a bed must be accepted within 24 hours, or is lost.

* Individuals needing crisis admission jump the waiting-list queue.

* Each resident must have a written plan of care compiled by the physician, social worker, nurses and other health professionals within 21 days of admission. It provides direction to staff and includes goals for improvements. Must be reviewed and revised every three months.

* As power of attorney, you have the right to a copy and an explanation of the plan, as well as all health and medical records.

* Staff must document all significant information.

* The Residents Bill of Rights law for residents in nursing homes includes the right to be properly sheltered, fed, clothed, groomed and cared for; the right to be treated with courtesy and respect, and the right to live in a clean and safe environment.

* By entering a long-term-care facility, a resident does not give up legal rights.

* Theft is a common complaint. You can call in police, even if the administrator disagrees and the facility's contract says it is not responsible for lost or stolen items.

* Clothing gone missing is a common occurrence. Don't take good clothes or valuables.

* Lost dentures are a common problem and can be expensive to replace ($300 to more than $1,000). With persistence, you can sometimes get the nursing home to pay the bill. If staff say mom is throwing them in the garbage, request that staff check the garbage before emptying it. She's there because she needs help with such things.

* The facility must inform the Ministry of Health and Long-Term Care on alleged thefts.

* A record is kept on treatments and medications, including time, date and dose. Response must be monitored, evaluated and documented.

* You are entitled to see the doctor treating your parent as often as necessary.

* You have a right to see and make copies of your parent's medical records. Legislation allows for this.

* There are strict rules over use of restraints.

* Unannounced inspections are done once a year by Ministry of Health and Long-Term Care. A brief summary on every nursing home in Ontario is available through the ministry website. It only cites what sections of the Nursing Home Act were not complied with and what standards were not met.

* For details specific to your mom's place, a full report with incidents specific to that facility must be on view in the facility. Once in hand, go past the "legislation sections not met" to the back section to get the detailed incidents -- for example, "door from locked Alzheimer's unit was not locking ... two residents were observed leaving the secure unit on several occasions."

You are also entitled to a copy of this report if you wish.

* Be aware of the complaints system. Raise concerns first with staff. If not satisfied, put the complaint in writing to the facility's director of care. If the problem continues, make the complaint to the health ministry's regional compliance officer who will investigate.

* The facility must have family consent to treatment before starting it.

* Some homes have a quota on diapers.

* Some people have been told that they are creating problems and as such are barred or restricted from access to a long-term-care home under the Trespass Act. As long as a resident wants you there, you have a right to visit. It is their home.

* Talk to other families. Generally they experience similar problems, and you can band together to resolve issues or make a complaint to the health ministry, which is more effective.

* Be as diplomatic as possible. Don't burn your bridges by going to the ministry right away.

* Be aware the facility doctor may not be a geriatrician. You are entitled to a second doctor's opinion.

* Nursing homes aren't generally staffed for people with behaviour problems. If you have the funds, hire a sitter or professional to be with mom in the facility. There is a ministry fund to help pay for this care.

Power of Attorney (PoA):

* Two kinds: power of attorney for personal care, and power of attorney for property.

* Nursing homes will push for a PoA, but it's not necessary. Without one, the next of kin is the substitute decision-maker if parent is incapacitated.

* PoA cannot be overridden by siblings unless challenged in court.

* PoA must know exactly what the parent means by do-not-resuscitate order -- no medical treatment when there is no reasonable hope for recovery, except to control the pain OR absolutely nothing, even for pain.

* Should parents place their estate and assets in joint accounts with their children's to avoid estate administration taxes, it could lead to family squabbles and a legal minefield. Power of attorney is a good alternative.

Doctors visits and medical records

* Be aware that common infections like urinary tract infection (UTI) can cause confusion. It may not necessarily be dementia or Alzheimer's.

* Try to learn as much as you can about what's available, like special geriatric services and regional geriatric centres.

* Ask the doctor for referrals. Be aware he or she is busy and may not know of all the resources available.

* Make sure all complex needs are articulated to doctors.

Medications:

* The elderly react to medications differently than others. Some can lead to drowsiness, falls or confusion.

* Any symptom in an elderly patient should be considered a drug side-effect unless proven otherwise.

* Don't make changes on your own without consulting the doctor or pharmacist.

* If a new medication is started or an unusual symptom occurs, question it.

* As of April 1 this year, there is a Ministry Meds Check program -- a person 65 and older and on three or more medications is now entitled to a half-hour with their pharmacist to go through all their medications. The pharmacist then provides a list. If there are any changes, notify the pharmacist to update the list.

* Know exactly what medications your parent is taking. Have a list readily available, carry it in your wallet and have a copy for them.

* Consult the pharmacist before your parent takes any over-the-counter medications. Come armed with the medications list. There could be interactions.

* Use one pharmacy so it can watch for interactions.

* Some nursing homes use a high number of prescriptions of antipsychotics and antidepressants to control behaviour or calm residents, instead of looking for the cause of the problem -- which can be as simple as your parent not liking their caregiver's approach.

* Some pharmacies have medication- management programs for seniors -- in which they receive a week's supply, with each day's worth of pills individually wrapped to prevent problems of overdosing or forgetting if pills were taken. It is sent out weekly without having to reorder each time.

Driver's licence

* If mom or dad refuse to give up their licence and you think they are a danger to themselves and others on the road, employ the good-cop, bad-cop technique. You be the good cop and let the care provider or doctor be the bad cop, telling them they can't drive anymore. * You can secretly call the doctor to tell them of your concern ahead of time.

* Be aware that having a licence removed can be devastating because it means lost autonomy and increased dependency. The next step is often assisted living, and everyone is aware of that. If all else fails, notify the police.

The Highway Traffic Act section 203 requires physicians to report to government any person 16 years of age and older who is suffering from a medical condition which may interfere with their ability to safely operate a motor vehicle. Driving privileges can be suspended as a result.

(Information gathered from seniors' advocates, caregivers, professionals and government guides.)

cfragomeni@thespec.com

905-526-3392