Ignorance is not blissful when it comes to a disease like Alzheimer’s. The most important thing you can do is to get educated about the disease. The fact you’re reading this article shows that you are already making strides in that direction. Anticipating changes in your loved one’s symptoms, behaviors, and personality will prepare you to cope with these changes when they come.
It will help you better understand some of the more unusual behaviors and personality quirks and help you devise strategies for how to deal with these changes. It will also help you realize that these are the result of the disease, not anything personal that your loved one is doing to insult or attack you. To learn as much as you can:
• Read up on the disease. Go to the library and get books on the topic. Check the Internet, which has a wealth of information about the disease. Log on to Web sites like the Alzheimer’s Association at www.alz.org, where you can look at newsletters, articles, and press releases about the disease. For more information, see “Resources” on page 229.
• Find and join a support group. Learning through the experiences of others, especially those whose loved ones are slightly more advanced than yours is, can help you find the practical advice you need to handle day-to-day matters. Support groups are also a great avenue for locating community resources.
• Find a doctor who your loved one likes, but also one who will talk to you, the caregiver. A survey commissioned by the Alzheimer’s Association in 2001 found a major communication gap between caregivers and the doctors looking after their loved ones. Among the findings: 57 percent of caregivers said they wanted information about what to expect as the disease progressed, and only 3 8 percent said they received such information. But 83 percent of physicians said they do provide that kind of information to caregivers. Similar numbers were found in questions regarding medications, recommendations on caregiving, and the advice on helping patients with day-to-day tasks.
• Get support and information from other sources as well. Taking care of someone with Alzheimer’s requires a wealth of knowledge about numerous topics that range from the legal and financial to the medical and practical. If you can, divvy up those tasks among other family members. Ask your brother the accountant for help with making financial decisions about tax ramifications. Consult a lawyer friend about choosing a durable power of attorney or making up a will. Talk to your sister the physical therapist about finding the best medical care. The idea is not to burden yourself with doing it all, especially if you have family and a circle of friends who can help.