Life should not stop just because you are diagnosed with HD. The disease may bring major changes in your life but you are still able to contribute in a meaningful and valuable way. It is important to reflect on the future and consider the need to plan accordingly, in this way, you are able to exercise control now over how important decisions will be made when you are less able. You might find you have less ability to handle your financial affairs with the same degree of competence as you had previously. It may help to talk to others who have been in a similar situation to learn and find ways of coping. Planning ahead to find out what help will be available, whether financial, legal or involving care, can be reassuring. It takes courage to do this, and it may not be right for everyone. Some find it best to live each day as it comes, hoping that in a few years time, treatment will improve and the outlook for HD will be very different from now.

Planning ahead means thinking about what is important as well as what is not so important. It also means talking about the future with those closest to you. The assistance of family and friends in helping you plan your financial and legal affairs can strengthen relationships and foster compassion. By planning ahead, you and your family and friends can still get pleasure from life and even a renewed sense of the value of living it to the fullest.

Attention to a number of legal and financial matters, as early as possible, can make life easier for you, your family and friends in the long term. Planning ahead enables you to provide input into the decision-making whilst you are still capable of making these decisions. . Planning ahead may also relieve some of the worry for caregivers and other family members when important issues arise during the progression of your HD.

How to Begin

Begin simply with yourself. Try to confront and understand any fears you might have: do they relate to a possibility of pain? Loss of dignity? Not being clearly understood by others? Being alone? Leaving loved ones and unfinished projects behind? Leaving your loved ones without adequate financial resources?

Once you know that you want to explore these topics and make some plans, we recommend that you begin by talking. Talk openly to family and friends about your values and beliefs, your hopes and fears about your condition, and even the end stage of your life.

Consider the following issues and try to determine what legal and financial areas need immediate attention.

• Locate important documents such as wills, house and land titles, mortgage documents, birth and marriage certificates, insurance policies, superannuation documents, Centrelink and Veterans Affairs documents, share market certificates, and Enduring Power of Attorney form.
• Review financial resources and investment portfolios, including bank and investment accounts, bonds, Social Security, and employer pensions, and other entitlements.
• Check insurance coverage. Does it include life, health, disability, prescription drugs, and long-term care?
• Discuss long-term care options, including in-home care, assisted living facilities and Residential Aged Care.
• Discuss end-of-life wishes regarding life-sustaining procedures and palliative care.
• Consider preparation of estate planning documents and advance care directives, wills, enduring power of attorney (medical and financial) and guardianship.