by Paula Spencer, caring.com
Practical steps you can take when you’re wondering, “Where do I start?”
Let reality sink in.
Whether you’ve suspected the diagnosis for ages or it’s come as a shock, absorbing the reality ahead of you can be a sobering — but critical — process. Especially if much of the burden of care will fall on your shoulders, it’s useful to start out recognizing that Alzheimer’s disease can be an emotional roller coaster. Uncertainty about the disease’s pace can make planning for the future difficult. Alzheimer’s is considered a chronic disease that can continue for 15 to 20 years or more, with progressively more challenging stages whose length and experience can vary widely from person to person. The average life expectancy after a diagnosis depends on one’s age at diagnosis and the severity of symptoms; a major long-term study has found that in general the disease shortens life expectancy to about half that of someone the same age without the disease. A person with severe symptoms at diagnosis is apt to be shorter-lived than someone with mild symptoms, whose downward spiral may begin quite slowly and last 15 years or more.
Even as your focus is on your loved one’s health, it will be critical to stay aware of what you’re experiencing and how it affects the many dimensions of your life. Disbelief, denial, grief, fear, and financial worry are just some of the very common feelings you can be expected to have.Talk to other family members to help make the situation more “real” and to get a reality check on how you’re handling it.
Get to know the turf.
Alzheimer’s is seldom a disease people in midlife have much firsthand experience with. Take some time to learn a bit about what you’re dealing with. You’ll find masses of information out there. Shortcuts on what’s critical: Alzheimer’s stages, common care-giving issues, and what treatments are available, including any medications your loved one’s doctor prescribes and any lifestyle practices that can forestall the disease’s progress.
One particularly insightful kind of reading is a book written by someone who has the disease, which may help you step into your loved one’s shoes and anticipate issues. A good choice is Alzheimer’s From the Inside Out by Richard Taylor.
Talk to a geriatric care manager or consultant.
Many people skip this invaluable step. A professional with experience advising people with Alzheimer’s and their families can be a shortcut to navigating the labyrinth of resources and questions you’re facing. Geriatric care managers typically have training in gerontology (the study of aging),social work, nursing, and/or counseling.
Use this person to:
- Locate good local resources
- Help coordinate care if your parent has other medical issues
- Advise you on how to handle symptoms and behavioral issues
- Help you safety-proof your loved one’s home — or your home
- Track routine care, from appointments to prescriptions
- Mediate family disagreements
- Make home visits
- Refer you to specialists
At first, you may just want a go-to person to answer initial questions, even if you don’t wind up hiring a consultant over the long term. Ask if the office of your loved one’s doctor has someone like this on staff or can give you a referral. The National Association of Professional Geriatric Care Managers offers a directory of members. Locally, in Raleigh, NC: www.rgcmgmt.com