How to Find the Help You NeedCaregiver Support Fact Sheet
Not only is the diagnosis of Huntington’s disease devastating in itself, but the progression of the disease and the changes it brings can be difficult for both the individual and family members. The emotional strain is just one of many challenges but caregivers should know that they don’t have to struggle alone. There are many resources available that provide all types of support, and it’s important to take advantage of any offers of help.Informal networksDon’t hesitate to accept help from family, friends, co-workers and neighbours, who can visit, offer companionship and support for social and recreational outings, help with household chores, provide transportation to appointments or just be there to listen and support.Ask for help. People may not always offer their time but are usually more than willing to assist when asked.Community groups such as neighbourhood clubs, professional associations and churches can help families trying to cope with HD. Services may include children’s camps, family retreats, home visiting programs, weekly discussion groups and recreational activities.Health and social servicesYour family doctor is an important resource. Regular visits not only ensure good general health, but also help to create a close relationship between doctor and patient. Your doctor may be able to make a referral to a community resource or suggest a service such as occupational therapy or genetic counselling.Home care programs are often available through the provincial health care system. These services, which can include nursing, physiotherapy, social work and personal care, can enable people to live at home as long as possible, delaying a move to a long-term care facility and taking some of the burden off of family caregivers. Private home care agencies often provide services similar to the government home care programs. This may be an option worth considering, particularly in times of emergency, short notice or as a supplement to public services.Many communities offer an extensive range of support services. Adult day centres, Meals on Wheels, transportation services, financial assistance, home and yard maintenance, individual and family counselling, speech and swallowing therapy and emergency response systems are some of the programs offered in many communities, but additional services may also be available.Finding someone who can help you navigate through the vast array of services available in Canada can also be helpful. For those enrolled in a provincial home care program, the case manager or case coordinator can assist in choosing the right services for each individual. The Huntington Society of Canada employs trained social workers in its Resource Centres and IFS programs. These are ideal people to turn to when looking for information, education and assistance in locating community services. Participating in a support group is another excellent way to gain first-hand advice and recommendations. There’s no need to feel alone when a friend or family member is diagnosed with HD. Reaching out to the people and services in your community can make a world of difference.Adapted from the HD Fact Sheet: How to Find the Help You Need.
Not only is the diagnosis of Huntington’s disease devastating in itself, but the progression of the disease and the changes it brings can be difficult for both the individual and family members. The emotional strain is just one of many challenges but caregivers should know that they don’t have to struggle alone. There are many resources available that provide all types of support, and it’s important to take advantage of any offers of help.Informal networksDon’t hesitate to accept help from family, friends, co-workers and neighbours, who can visit, offer companionship and support for social and recreational outings, help with household chores, provide transportation to appointments or just be there to listen and support.Ask for help. People may not always offer their time but are usually more than willing to assist when asked.Community groups such as neighbourhood clubs, professional associations and churches can help families trying to cope with HD. Services may include children’s camps, family retreats, home visiting programs, weekly discussion groups and recreational activities.Health and social servicesYour family doctor is an important resource. Regular visits not only ensure good general health, but also help to create a close relationship between doctor and patient. Your doctor may be able to make a referral to a community resource or suggest a service such as occupational therapy or genetic counselling.Home care programs are often available through the provincial health care system. These services, which can include nursing, physiotherapy, social work and personal care, can enable people to live at home as long as possible, delaying a move to a long-term care facility and taking some of the burden off of family caregivers. Private home care agencies often provide services similar to the government home care programs. This may be an option worth considering, particularly in times of emergency, short notice or as a supplement to public services.Many communities offer an extensive range of support services. Adult day centres, Meals on Wheels, transportation services, financial assistance, home and yard maintenance, individual and family counselling, speech and swallowing therapy and emergency response systems are some of the programs offered in many communities, but additional services may also be available.Finding someone who can help you navigate through the vast array of services available in Canada can also be helpful. For those enrolled in a provincial home care program, the case manager or case coordinator can assist in choosing the right services for each individual. The Huntington Society of Canada employs trained social workers in its Resource Centres and IFS programs. These are ideal people to turn to when looking for information, education and assistance in locating community services. Participating in a support group is another excellent way to gain first-hand advice and recommendations. There’s no need to feel alone when a friend or family member is diagnosed with HD. Reaching out to the people and services in your community can make a world of difference.Adapted from the HD Fact Sheet: How to Find the Help You Need.
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