Where do I start sorting through providing care for my husband with dementia?
My husband was recently diagnosed with dementia. We aren't even sure which kind yet. He seams to be getting worse very quickly. I'm already worn out and frazzled down to just a mere shadow of who I once was. I'm trying to work to keep us afloat financially. I'm scared to death. I don't know where to turn to get help and information on "spending down" assets; or even on how to not be so exasperated by his new behaviors. I feel lost, alone, afraid, and totally burned out. Where can I turn to speak to people that have gone through this and know what it is like. I feel as if I live in OZ.
Expert Answer
Family caregivers often express that the period following the initial diagnosis of a loved ones dementia is the most stressful time. Some say it is 'surreal' or like an out of body experience-or as you say, "living in Oz". As they struggle to learn all about the disease and embark on long term care planning, they simultaneously are coping with the patient's cognitive and behavioral changes. And often, like you, they have work and other family obligations. The initial challenge for you is to prioritize the issues and then to address them one by one. Attempting to confront them all at the same time can be too overwhelming.
The Alzheimer's Association (http://www.alz.org)is a national organization with local chapters. They offer extensive resources including educational sessions and support groups and most local chapters try to schedule meetings for working caregivers. Topics include financial planning along the entire continuum of care and strategies for behavioral management. Each chapter is able to tap local medical, legal and psychosocial resources as guest speakers. The support group will provide you with a confidential setting to be with other spouse caregivers experiencing what you are going through.
The "36 Hour Day" by Mace and Rabins is an indispensible guide for caregivers. Its Third Edition further expands information on day-to-day living with Alzheimers and delivery of care in today's marketplace. The internet also offers many websites for information and purchasing of adaptive equipment (http://AgelessDesign.com).
Sometimes, businesses offer employee assistance programs. If you work for a large company, you may be able to secure some support or referrals at the work place. If your spouse is a veteran, you can also secure benefits and resources.
The guiding principle for Alzheimer spouses is to reach out to others- friends, family, local resources- as much as possible to be able to make better informed decisions in the future and to lower caregiving stress.