Huntington's Disease Support Information
HD & Family Life
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Index~HD Search

Family Life

A diagnosis of Huntington disease invariably deeply affects the person
and every member of the family, as well as a wide circle of friends, work associates, neighbours, and others in the community.
As with any serious diagnosis, the person with HD and the family can expect to experience a variety of emotions, some even frightening or contradictory. Disbelief or denial, rage, despair, guilt, shame, sadness, loneliness, self-pity, envy of others' good health, relief that a diagnosis has finally been made, thoughts of "why me?" -- all of these feelings and many others are common and normal reactions.

Families should keep in mind that their physical and emotional needs are important and should be met. They should not be afraid to ask questions and should make sure they understand the answers. Families must also remember that needs vary over time and a solution for one stage of life may have to be re-examined at another.
Counselling can go a long way toward helping persons with HD and their
families retain maximum productivity and acceptance while coping with a difficult and challenging situation.

The whole family must understand what is happening. It is important to
accept the truth -- that a family member has HD -- and speak openly about the situation. It may be very helpful for children to realize that it is the illness, and not them, causing a parent's outbursts. There are helpful articles available on the needs and reactions of children.

Chronic illness like HD tends to isolate family members from people just when they need them most. Truth and honesty within the family helps friends and relatives feel more comfortable in their relationships with the person with HD and makes it easier to lend much needed help and support.

Persons with HD and their partners sometimes experience role changes. Over time, the relationship will become drastically altered, and the person with HD will be less of a friend, companion and lover. Common sexual problems are loss of desire, inability to have sex, and conflicting desires and needs. A general loss of desire may be due to depression, medication or emotional problems.
This change in the relationship adds personal grief to a complex situation, and both the partner and the individual with HD may need professional support to deal with these changes.

Thoughts of suicide happen with persons who have Huntington disease, but talking about suicide does not make it happen. In fact, talking about it can often uncover alternative solutions to what seems to be an intolerable situation.

Family members experiencing changes in the behaviour of the person with HD may not realize that this does occur in HD. Feeling that it is unique to their family, they may not wish to share it, or try to handle it on their own, and further isolate themselves.

Long-range financial and legal planning is important to consider -- for someone who has just been diagnosed or for someone at risk.
Topics to discuss with a lawyer may include giving a power of attorney,
perhaps changing one or both wills depending on their provisions, changing ownership of property such as the house and cottage, making bank accounts and safety deposit boxes available to the other partner and so on.

Obtaining insurance coverage for persons at risk has become a very
serious problem. The Huntington Society of Canada, through the MELSI
(Medical, Ethical, Legal, Social Issues) Committee of the Canadian Genome Project, is currently exploring alternatives. It is also monitoring the situation globally through the International Huntington Association.

Because of the efforts of the Huntington Society of Canada, there are
many resources available to HD families. A wide range of informative publications and videos can be purchased or borrowed, (recommended reading: Understanding Huntington Disease: A Resource for Families.) Chapters and area reps in each province can put the family in touch with a large network of support, both lay and professional, to help the family cope.
Daily living with HD

Hearing a diagnosis of Huntington disease is always hard. There are generally five steps we all go through when we are learning to cope
with a difficult situation. People with HD and their family members go through the same steps. In no particular order, they are:

Denial -- stunned, dazed or refusal to accept the information; sometimes the person accepts the diagnosis well, but later cannot recall what was said. In many cases, denial in people with HD is due to brain dysfunction. They may suffer from anosagnosia (a lack of self-awareness) and don't recognize
their disabilities.

Anxiety -- a response to fear of the unknown future; the person suffers headaches, fatigue, insomnia, irritability, and will require support.

Anger -- the person may be openly hostile to friends, relatives and medical personnel or display angry behaviour.

Depression - this is a natural and necessary phase for eventual readjustment.

Stability -- a period of acceptance and adjustment to the diagnosis. With acceptance, the person begins trying new behaviour, planning for that other way of life.

The person who has just been diagnosed with HD should be encouraged to carry on normally, at work and at home, for as long as possible. It is often better to continue with lighter or easier jobs rather than retire from work or domestic duties altogether.

The quality of life of the person with HD and family is usually enhanced by therapeutic intervention: communication and swallowing therapy, physical therapy, occupational therapy, nutritional therapy, recreation (therapy) activities, music therapy, art therapy, pet therapy, relaxation therapy, and
various discussion groups to reflect the interests of various individuals (music appreciation, bible study, etc.)
The Huntington Society of Canada has several helpful booklets, articles and videos on these subjects. In some communities there are day programs where people with HD get together to socialize, have fun and exercise. A sense of peace and acceptance often comes from being able to share with others who truly understand what one is going through.

It is also wise for the person with HD and his/her partner or caregiver to work out a cooperative method for dealing with safety and medical issues, such as driving, smoking and wearing a Medic-Alert bracelet.
Huntington's Disease Society of Canada

In the USA please contact the Huntington's Disease Society of America
(HDSA) at (800) 345-4372) or visit their website 

Internationally, please visit the International Huntington's Disease
For Support Resources in the United States, check your State Pages on this website or contact the HDSA.
For guidelines and resources on Huntington's Disease, check out the HD Specific Handbooks section on this website or visit the HDSA website, "Information", "Publications For Resale".
For resources on legal, financial and end of life planning, see Our Final Journey