My husband and I have been married for 54 years. We continue to live in the home where we raised our three children. Now we are facing a very frightening situation. Looking back over the last couple of years, we see there were signs that something was not right. My husband was getting more and more forgetful. One day, he forgot to pick me up at the library. Another time, he didn’t realize that it was his birthday and we were going out to a restaurant with friends. He took $100 out of the bank and then he didn’t know where the money was. He even questioned me, wondering if I took the money. He kept asking me the same question over and over, for example,“When are we going to the supermarket?” He became irritable and short with me. That was not like him. He was always such an easygoing person. Finally, our son told us he thought something was really wrong and insisted that we talk to his doctor. We met with a neurologist who ordered tests. Then came the words “Alzheimer’s disease.” We were shocked. We still are. What help is available for people like us?
You and your husband are not alone—5.3 million Americans have Alzheimer’s disease; 5.1 million of those people are 65 years of age or older. Alzheimer’s disease is a progressive brain disease and the most common form of dementia. It affects cognitive abilities such as memory, language, concentration and problem-solving. It results in confusion, poor judgment, mood and behavioral changes that interfere with daily activities. Sadly, symptoms get worse over time and currently there is no cure. Research is being conducted all over the world to better understand the cause of the disease and to develop effective treatments. Until that cure is discovered, we rely on the tools and services of public health, medical and social service fields to help individuals and families manage the symptoms and provide the care that is needed.
The Alzheimer’s Association states that “active management of Alzheimer’s and other dementias can improve quality of life through all stages of the disease for individuals with dementia and their caregivers.”
You and your husband have taken the first critical step, getting a thorough evaluation by a neurologist to screen for any conditions that might cause dementia-like symptoms but can be reversible such as depression, delirium, thyroid problems, vitamin deficiencies, side effects from medications and excessive use of alcohol. The neurologist will make the formal diagnosis as he or she did for your husband.
Learn about the illness. Contact the Alzheimer’s Association, which is an outstanding advocacy group and source of accurate information. Alzheimer’s New Jersey has offices in various locations in the state. The Greater New Jersey Chapter office is located in Totowa, NJ and can be reached at 201-261-6009. Their 24/7 helpline is 800-272-3900 and their website is www.alz.org/nj.
1. Assess what assistance your husband needs right now. For example, does he need help picking out clothes, showering, taking medication? If he is still driving, there needs to be a discussion with the physician about his driving skills. He can sign up for a driver evaluation. After determining what assistance is needed, identify how the extra supervision and help will be provided. Reach out to family and friends.
2. Legal and financial planning. You and your husband should have important legal documents: Durable Financial Power of Attorney, Healthcare Proxy and Advance Directives. Review your finances. Make sure you have a realistic budget. Are there funds to pay for home health services? Do you qualify for state and county programs? Consult with an eldercare attorney and a financial planner.
3. Counseling and Support Services. If your husband is in the earlier stage of the disease, he may wish to participate in a support group or seek counseling services.
4. A caregivers’ support group is a tremendous source of practical information and emotional support for family members. You will meet with other people facing similar challenges and uncertainties. The groups meet once a month and are facilitated by a trained group leader.
Introduction of appropriate professional services as needed:
•Aging life care managers—assessment, personalize plan of care, care coordination, monitoring and emergency management
•Home health aide—provides companionship and supervision, assistance with grooming, toileting, dressing, food preparation, light housekeeping, grocery shopping.
•Adult day center—activity program that provides structured, supervised social and recreational opportunities with door-to-door transportation and hot meals.
•Home safety evaluation—to ensure your home is equipped to meet your needs for safety, function and comfort.
If you are caring for an older adult, contact the Jewish Home at Home and speak with a care management professional to learn how we can help. Call Susan Lilly, LSW, C-ASWCM, at 201-750- 4247 or email [email protected].
By Susan Lilly
