Your elderly mom's health has deteriorated to the point that her care now depends on your actions. To be effective in getting her the best possible care, you need to adapt quickly, morphing into a superadvocate.

It won't be easy. Be prepared for a minefield. Navigating the system will, on many days, be stormy and laden with frustration and stress.

This, despite all the help available from health agencies such as the local Community Care Access Centre (CCAC), the provincial government agency that designates how much home care your mom or dad is entitled to, and stickhandles the admission to nursing homes.

But what you want and what government agencies are mandated to do, don't always mesh. Getting the kind of care you feel is appropriate can be intensive and time-consuming.

When parents' health fails, it means, for both you and your mom or dad, numerous doctors appointments, issues around medications and power of attorney, deteriorating mental and physical capabilities, a change in family relationships and dynamics.

You now become the "parent" to someone who is loath to lose independence. And your expectations of help from siblings can lead to either relief or disappointment.

There will be issues around quality of care, whether at home or in long- term care. In all of this, you need to know your rights and responsibilities as a caregiver. Among the best advice from those who have already gone down this road:

* Do your research.

* Don't let the system intimidate you into making hurried decisions and expenditures.

* Question what doesn't seem right.

* Push for what you need.

Dr. Sunny Luthra, an authority on mental capacity and behaviour at St. Peter's geriatric hospital, suggests you become well-informed so you can advocate to the end.

"Somehow, people who make the better noise get the better care," he says. "I don't know why that is, but it is."

The more informed, the stronger the champion you are for your loved one.

Hamilton Mountain's Joyce Lee knows this well. She has cared for her 75-year-old, stroke-ridden husband, Roy, for three years at home, fighting for home care, bucking the system if necessary, and refusing to buckle when told she would be charged for services if she doesn't comply.

In searching for a nursing home for Roy, she did not list three choices as the CCAC recommends.

"I didn't find three that I liked, so I put St. Peter's, St. Peter's, St. Peter's. They bully you," she says matter-of-factly. Lee prefers to continue caring for Roy at home, difficult as that may be, rather than put him into a facility she doesn't want for him.

The local CCAC's Barbara Busing MacKinnon says people aren't forced to specify three choices, but are encouraged to as that will provide a greater chance of getting into one of them.

Lee cared for her mother before her husband's situation came about. She says that, after her mother suffered a stroke, a worker from the CCAC and hospital insisted her mother go to the first nursing home available. Lee said no. It is hospital policy that those on a waiting list for long-term-care beds who are taking up hospital beds go to the first local long-term-care home with an opening.

"They told me I'd have to pay something like $200 a day for the (hospital) room ... and I said fine. So when I did get her settled into a nursing home (I wanted) and went down to pay the (hospital) bill, I said 'here's the bill, here's her income. Now tell me where I am going to find the amount in this income to pay you.'"

The hospital did not ask her to pay the extra amount. In fact, it appears that no one in Hamilton has ever been forced to pay the bill for a senior taking up hospital space while waiting for a bed, although it is within the mandate of hospitals to request that fee.

Once in a nursing home, you may face new challenges.

Lee says she often found her incontinent mother wet when she visited her in a long-term-care home. She asked staff for help, but when no one came, she changed everything herself.

"Then I put all the dirty clothes and bedding out in the hall on the floor so the visitors had to walk around this pile of wet sheets. They said 'you can't do that.'

"I said 'I just did. I don't want to see her like this ... How often does this go on when I'm not here?'"

Karen Sullivan, Ontario Long Term Care Association executive director, says this type of incident can happen because personal-support workers are "incredibly busy" with 12 to 14 residents each per shift to look after.

Keeping her husband Roy at home is no easier for Lee. She must rent a hospital bed at $100 a month, have a care worker each night help her put Roy to bed, and her son Chris has to come over to carry Roy outside to go to doctors appointments as the house lacks a wheelchair ramp.

The CCAC's Busing MacKinnon says, "What we can offer may not be what the family wants ... we need people to understand our limits."

cfragomeni@thespec.com

905-526-3392

Full Circle: A Family Guide to Eldercare

The Spectator presents a week-long series on how to get help for seniors in need of care.

Saturday: The search: One family's journey

Monday: Staying home: How to get help

Yesterday: Long-term care: Finding answers

Today: Know your rights: Legal and personal issues

Day 5: End of life care: Compassion and planning

Day 6: The Sandwich Generation: Feeling the squeeze

* Log on to thespec.com/fullcircle for the full series, more links, videos and slide shows.

* Give your views on today's issues on the Full Circle forum at ideas.typepad.com/circle.

* Send us tips on how to navigate eldercare. E-mail fullcircle@thespec.com

* "It's almost like the world doesn't care. It's a really lonely feeling."

Check out Al Allaby's story at www.thespec.com/fullcircle.

* Advocacy Centre for the Elderly (ACE) 416-598-2656 advocacycentreelderly.org * Community Legal Education Ontario (CLEO) 416-408-4420 www.cleo.on.ca * Local compliance officer for Ministry of Health and Long-Term Care, Central South (Hamilton) regional office: 905-546-8255 * Fact Sheet, Information and Privacy Commissioner of Ontario Long-term Care Homes, Consent and Access under the Personal Health Information Protection Act, 2004 (used by caregiver to access parent's health and medical records) 1-800-387-0073 ipc.on.ca/images/Resources/up-1fact_09_e.pdf * Long-Term Care Facilities in Ontario: The Advocate's Manual (available from the Advocacy Centre for the Elderly, Toronto. Extensive and very useful, but fee charged.) For more links, resources, tips and guides, check out www.thespec.com/fullcircle.