A Price Worth Paying?

No doubt you sometimes imagine life after you retire – a time to relax a little, expand your mind, maybe travel abroad. With your pension, the worth of your house, and some investment income, you should be in good shape.

But what if you allow your mind to fast-forward a number of years to the crunch point you usually don't dwell on? Try it now – see yourself on your own at a time when simple activities like shopping, cooking, or maybe even bathing and dressing have become real challenges. You are frail and old, and you need some help.

What does the future hold?

Scenario 1

You are feeling helpless and frightened, but, because you don't want to burden your busy son, you still try to manage on your own.

Then you trip over a frayed carpet and break your arm. Hospitalized for a time, you enjoy the respite from your cares. A ridiculously young doctor tells you that your diet at home must be improved. By the time you are discharged you feel much better.

But life at home is still a struggle, and, as time passes, your chronic problems worsen. The medication the hospital recommended is too expensive to buy month after month, so you put up with the pain. You worry constantly about how filthy your house has become.

Time passes. You have no social life because you cannot leave the house. Your stressed son does what he can, but most of your personal needs are satisfied by a care agency he picked from the many listed in the phone book. Though you pay for half an hour of care and housekeeping four times a week, the turnover of poorly paid care workers often fail to do their jobs properly. At least one of these people has stolen from you. One morning you wake up and one side of your body is numb and useless. All day you wait, and when your son visits after work he finds you soaked and tearful.

You are rushed to the hospital, where you are told that you have had a stroke. Living at home is no longer possible. Weary and frightened, you have to accept something you always wanted to avoid, and you take a place in a nursing home.

This nursing home has many kind and hard-working staff, but you soon notice that the faces change very quickly. No attempt is made to rehabilitate you. Often you have to wait too long to be taken to the toilet. Sometimes there isn't a nurse to dispense your drugs. Someone tells you that there is insufficient money to pay decent wages.

But the cost of care is cripplingly expensive for you. Your funds evaporate quickly, and after the first year you have become so impoverished that you need government assistance.

You are depressed because you feel ashamed and worthless. Your son cannot help you. Two years later you die.

Scenario 2

You are apprehensive, but confident you will receive help – after all, this government agency has been speaking to you since you turned 65, arranging your annual medical checkup, and giving you free advice on how to avoid age-related ailments. So you reach for the phone and dial the number – the widely advertised free number that gives access to all long-term care services.

Within minutes, a friendly voice has assigned you a case manager, who will come to see you the day after tomorrow. At that time, using the standard national criteria, the case manager assesses that you need assistance with one or more of the activities of daily living. She swiftly coordinates a meeting with you, your doctor, a social worker, a visiting nurse, and your son to pool information and to determine a strategy to maintain your independence.

Following that meeting, your home is quickly adapted to aid your mobility and minimize the chance off a fall – grab handles sprout from walls, loose carpets are fastened down, and a ramp replaces the step at your front door. In case you do have an accident, you wear an emergency pager around your neck, which links you to a monitoring station.

Next, a plan that combines homemaking services, assistance with daily living, and nursing input is agreed upon. All the private agencies providing these services are licensed and rigorously inspected – the workers who help you are well trained and their backgrounds have been checked.

Transport is provided for regular trips to a day hospital for therapy and social interaction. Your son has a key role in your care, looking after your finances, keeping the house repaired, and shouldering some part of your personal care. When your son needs a break, you also take a holiday: you have a short respite stay in a modernized nursing home, where you enjoy entertainment and benefit from some physiotherapy.

Nobody discusses the cost of these services, as they have already been paid for. There is no possibility that you will become impoverished, (if you become acutely disabled or extremely confused, you may become a resident in a nursing home, but you will be asked to pay only for the accommodation cost of your stay).

Eventually, your chronic problems worsen with age and you die, peacefully, in your own bed. The specialized nursing equipment, lately used in your care, is taken from your home to help someone else. Your son is upset that you have died, but pleased that you lived your last years with dignity in your own home.

Scenario 1 is an extreme example of what vulnerable older people experience each day.

Scenario 2 is an idealized representation of a modern approach aimed at maximizing independence and leveraging the input of family caregivers. Remarkably, Scenario 2 is also a less expensive option because it:

Why the Resistance to Change?

Obstacles to incurring the cost of person-centered long-term care, delivered primarily in home and community settings, include the following:

But despite the obstacles, the voices of ordinary people should ensure that choice and independence are the way of the future for citizens of both Canada and the United States. Older people currently in receipt of long-term care were young at a time of economic deprivation, which makes them a silent generation, often grateful to have any state aid. But the consumer generation of today – the selfish product of post-war affluence – will demand more. If necessary they will shout.

As the baby boom generation enters retirement over the next three decades, it will exercise electoral strength and economic influence. At the same time, because of falling birth rates, the ratio of working taxpayers to retired people will decrease. That is why long-term care – where it is provided, the quality of its services, its cost, and how that price is met – is becoming an increasingly hot domestic and international issue.

As the boomers age and become aware of their own impending need, they will accept the need to pay a little more in tax or insurance to secure a properly funded, integrated long-term care system. Boomers will not tolerate the horrors of scenario 1.

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