Take Care of the Caregiver
Living with HD can mean many things. It can mean that you are symptomatic or that you are at risk for the disease. It can also mean that you are a caregiver for a person with HD. Caregiving is an act of courage, love and sacrifice. As a caregiver, you have chosen to put the wellbeing of a loved one with HD on an equal footing (or even above) your own needs. There is no higher calling than caring for another, but to be effective for the long term, you must also honor and nurture your own body and spirit.
Becoming a caregiver may happen slowly, but it often begins in turmoil, as a response to a diagnosis or a loved one’s decline in their ability to meet daily responsibilities. There may be an initial flurry of activity as you try to address the current crises. At that point, questions are typically straight forward and action based — what paperwork needs to be filled out, what does the doctor say, what medications are needed — primarily problems that have immediate solutions. Then, as the initial rush subsides and the depth of commitment required to be a caregiver become apparent, other questions begin to arise — the big questions:
- Why do I have to face this?
- How will I face this?
- Why did things change?
- If everything happens for a reason, what is the purpose of this suffering?
There is no one set of answers to these questions. Finding meaning to life in the presence of illness, suffering and mortality is a profoundly personal journey. The things that may help along the way can include your relationships, your religion/life philosophy, or your appreciation of the eternal in nature, music, and the arts — anything that supports a feeling of connection, value and even joy while you are coping with the difficult and overwhelming tasks of caregiving. It will be an uneven process —two steps forward, one step back, one step off to the side — but worth the effort.
A Caregiver Guide for HD Families
HDSA’s A Caregiver Guide for HD Families provides tools for caregivers to help them at home with their loved one with HD. Professionals in the field who work with persons with HD and their families were instrumental in providing content. In preparation for developing the guide, HDSA surveyed the HD community in order to better understand the issues, behaviors and situations that most impact family caregivers.