Issue 94, September 2006
Easing the Transition from Driver to Passenger
This Article is Part Three of Three, relating to HD and Driving
The most effective approach to limit or stop driving involves
progressive steps and a combination of strategies that fit the family's
circumstances, resources and relationships. For people in the early stages of
Huntington's Disease (HD), driving is best reduced over time rather than all at
once. Families can help by finding ways to let others drive or reduce the need to
drive. Caregivers and families should be sure to address the important social
needs of the person with HD that were met through driving. When possible, include
the person with HD when planning ahead to limit driving.
Sometimes people with HD begin limiting where and when they drive. The following
signs indicate that a person with HD is modifying his or her driving behaviour:
- Driving shorter distances.
- Driving on familiar roads.
- Avoiding driving at night, in heavy traffic, on heavily travelled roads
or during bad weather.
Let Others Do the Driving
There is plenty of information available in your community about getting around without a car. Good sources of information are:
Some people with HD are better able to adjust to not driving if others gradually assume more of the driving responsibilities.
This option may work for people with HD who live in urban areas and are already accustomed to using these methods.
Taxis can be a cost-effective alternative, especially when fares are compared to the expense of gas, insurance, taxes, repairs and car payments. Total mobility vouchers (which give a reduction in taxi fares for those unable to catch a bus) may be available in your area. Ask your HD contact person where you can get them and what the requirements are. A disability allowance may be available to help with transport costs.
- Local and regional council offices
- Heartland Services centres in rural areas
- Age Concern
- Citizens Advice Bureaux
- Community service providers
- Community Centres
- Doctor's surgeries
- Libraries and recreation centres
Friends and Relatives
Friends, neighbours, relatives or caregivers can offer to drive the person with HD to appointments or other social events. Other family members will be more likely to assist with the driving if caregivers make specific requests and schedule appointments at times that work for those requested to help.
Co-Piloting Is Not The Answer
Some caregivers act as co-pilots to keep a person with HD driving longer. The co-pilot gives directions and instructions on how to drive. By chance, this strategy may work for a limited time. But in hazardous situations, there is rarely time for the passenger to foresee the danger and give instructions, and for the driver to respond quickly enough to avoid the accident.
Reduce the Need to Drive
Resolving the driving issue involves not only substituting other drivers or modes of transportation, but also addressing the reasons people want to go places. Caregivers can look for ways that others can help meet the physical needs of the person with HD, such as:
- Arrange to have prescription medicines, groceries and meals delivered, reducing the need to go shopping.
- Have hairdressers make home visits.
- Schedule people to visit regularly, either as volunteers or for pay.
- Arrange for friends to take the person on errands or to social or religious events.
Balancing the Social Needs
The following questions can help families and caregivers identify the social needs and develop ways to address them to ease the transition to not driving.
While caregivers consider ways to reduce the need to drive, it's also important to remember the social benefits the person with HD derives from interacting with others. As one person reflected: "When I went to the bank or drug store, I would stop at the local bakery for some pastries. Sometimes it would take most of the morning because I could take my time and chat with different friends along the way." If caregivers consider the social needs that were met through driving, the transition to not driving will be more successful.
- Where does the person with HD go? When and how often (e.g., grocery store, hairdresser, appointments, library or religious activities)?
- What services can be brought to the home (e.g., groceries delivered or in-home hairdresser)?
- Who can offer to provide transportation (e.g., neighbours running errands, relatives for doctors' appointments or a friend going to religious services)?
- Can visits from family or friends include outings (e.g., eating out or going to a park)?
Early Planning to Limit Driving
When possible, include the person with HD in the planning process. People are better able to respond to appeals to safety during the early stages of HD.
A simple written agreement can be drafted which nominates an individual the person with HD wishes to be the one to tell them when driving should cease. Example:
I have discussed with my family my desire to drive as long as it is safe for me
to do so. When it is not reasonable for me to drive, I desire ................ (person's name)
to tell me I can no longer drive.
I trust my family will take the necessary steps to prohibit my driving in order
to ensure my safety or the safety of others while protecting my dignity.
Signed ............................ Date ................
This informal agreement does not restrict driving at the moment of signing, but designates a responsible person to take necessary steps to ensure driving safety in the future. It respects the individual's dignity by focusing on the disease, not the individual, as the reason for driving restrictions and cessation.
The agreement is not a legal contract, but is a document to help plan for the future. Like plans made for medical and financial decisions, the form allows families to discuss matters and agree on a course of action before a crisis and while the loved one is capable of making decisions. The document does have limitations. Not everyone with HD will grant advance permission for someone to stop him or her from driving. The signed statement does not address when driving should stop, and it does not ensure that the person with HD will comply once the disease progresses. However, it is a tool that family caregivers can use.
Take the Keys as a Last Resort
Taking away the car keys or a driver's license, or selling or disabling the car should be a last resort. To the family member in the early stages of the disease, such actions seem extreme, disrespectful and punitive. And people with mild HD can ignore, undo or manoeuvre around those strategies by driving without a license, enabling the disabled car or buying a new car to replace one that was sold.
Once a person has stopped driving, caregivers must decide whether taking away the keys, license and car will help the person adjust or make it more difficult. Some caregivers remove the keys or the car from sight to avoid having the driving issue resurface. Others allow people to keep their keys, car and license to help them maintain a sense of dignity. Some people with HD stop driving but carry their license as photo identification.
Advice From Caregivers
Four basic principles that can help caregivers and people with HD manage driving and transportation decisions.
1. There is no easy answer; no right way.
Caregivers need to consider the personality and the abilities of the person with HD when making decisions over the course of the disease. They must take into account the roles and relationships within the family that affect decisions and their outcomes. Each family must select strategies that will work within its unique situation.
2. Begin discussions and planning early and involve the person with HD.
Ideally, a person with HD should make the transition from driver to passenger over a period of time. The written agreement can serve as the starting point for meaningful discussions about driving. Open, early and continual communication can help the person with HD and the family to agree on a course of action before a crisis occurs.
3. Base decisions on driving behaviour observed over a period of time.
Regular monitoring and assessing of driving helps caregivers respond appropriately. A diagnosis alone may not be sufficient reason for a person to stop driving. However, when it clearly is no longer safe for a person to drive, caregivers must not delay in taking necessary steps. In hindsight, many caregivers regret permitting a loved one to drive longer than it was safe. The result was prolonged anxiety for caregivers and placing others at risk.
4. Get support when making and implementing decisions about driving.
It is not healthy for the caregiver, the person with HD or the family as whole, when one person shoulders all of the responsibility for making and implementing decisions about driving and HD. Caregivers can make reasonable requests of family members and those outside the family. Neighbours, friends and relatives can contribute by providing for the emotional, social and transportation needs of the person with HD.
G.P's, specialists, lawyers, care managers; financial planners and your HD support worker can offer information, guidance and perspective. People in authority outside the family can reinforce the family's efforts to ensure the safety and dignity of a person with. HD.