What to Do After an Alzheimer’s Diagnosis
Taking these concrete steps will help you cope later on
You’re worried. Your mom has shown increasing forgetfulness for months. She even got lost going to the grocery store she frequents. You hoped things would resolve themselves, but instead, they kept getting worse. You took her to the doctor, hoping the problem was due to a bad interaction of her many medicines or a treatable infection. Instead, you got the dreaded diagnosis — Alzheimer’s disease.
While the news can be shocking, you can help yourself and your loved one by following the tips below. But first, a little about the disease.
Alzheimer’s is the primary dementia-causing illness in the United States. (There are over 15 others.) The effects are not restricted to memory, but instead impair every aspect of function and personality. The disease relentlessly progresses over time, literally shrinking the brain to the point where patients can lose the ability to recognize family members, button a button, feed themselves, walk or even swallow. There is no cure. Patients live an average of two to eight years after diagnosis.
Therefore, time is precious. So what can you begin to do immediately to prepare yourself, the family and your mom for what is surely coming? The following steps can help.
Organize Documents and Resources
Start by contacting your local chapter of the Alzheimer’s Association. It has a wealth of free brochures and insightful information for the patient and the family. The larger chapters even conduct an in-home care consultation to assist in determining the best care options.
Get professional assistance in coordinating care by finding geriatric care managers and doctors specializing in dementia.
Locate adult day care services (where you take your parent for a period of time) or respite care services (people who come into the home). Investigate the memory care facilities in the area, so you know what is available and what costs are involved if it becomes necessary to move your parent.
Think about your social networks. Are there people, perhaps at your place of worship or in your mom’s friendship circle, who can help with errands, meals, home maintenance tasks and other necessities?
Look for support groups. Caring for a family member with Alzheimer’s is demanding, exhausting and eventually all-consuming. It can be a tremendous benefit to talk with others in the same situation.
At the same time, start gathering your parent’s important documents and data, including things such as:
- certificates of birth, marriage and divorce
- last will and testament
- health care directives
- power of attorney papers
- veteran’s papers
- Social Security number
- car title and keys
- home deed or mortgage papers
- all personal and property insurance policies
- pension and/or 401(k) account information;
- names of service professionals (banker, lawyer, estate planning attorney, financial adviser, insurance agent, doctors, etc.)
- employer documents
Ensure you also know passwords to parent's computer, cell phone and all online and social media accounts. Keep all these in a secure and centralized location.
Since short-term memory is affected well before long-term memory, your mom may clearly remember something from 50 years ago but have trouble recalling what happened yesterday. As the disease progresses, the long-term memories will begin to disappear too, until there is nothing but the present moment, but there is usually a significant amount of time in between.
In those early stages, then, make an effort to collect and record long-term memories. Ask your mom about her childhood, any pets she had, her early adult life, how she met your dad, what it was like when you were born and events that shaped her life. Discover, too, her favorite songs and hymns from various points in her history, since music recognition is retained longer than data.
Then, even when her short-term memory is fading or gone, you'll have plenty to discuss. You can make her smile, sing some of her favorite songs, laugh over her teen-year stories and maintain a stronger relationship. This is an effective strategy to stay connected for as long as possible.
A nice side benefit: You’ll learn things about your mom you never knew before!
Continue to Do Enjoyable Things
Participating in the same things that brought enjoyment in the past has been proven to relieve stress and increase the satisfaction level of Alzheimer’s patients and their caregivers.
So if you enjoyed going on walks with your mom, plan to go for walks. If you cooked together, keep it up (as long as you can do so safely). If you ate ice cream as a special treat, regularly enjoy a cone. Don’t let simple pleasures go away just because your mom may not remember.
Plan Care Options
Many families try to keep their loved one at home as long as possible. If that is your goal, make reasoned plans. Start by examining her living space. Remove throw rugs and tripping hazards. Install grab bars and handrails. Determine how to lock outer doors to prevent wandering. Minimize stair use.
Then think about personnel. Is there someone to act as full-time caregiver? Who else in the family will help and in what ways? Will the caregiver be fairly compensated, especially if the burdens of care are uneven in the family?
Recognize limitations. For everyone’s sanity, it may eventually be necessary to move your mom to a memory care facility. It is helpful to list decision-triggering conditions ahead of time. This can be guided by the doctor, representatives from the Alzheimer’s Association, a geriatric care manager or others with experience caring for dementia patients.
Prepare for Anticipatory Grief
Most people think grief begins with a death. That’s not true. You grieve from the moment you get the Alzheimer's diagnosis. Then grief continues as you lose your mom inch by inch. In other words, grief will be a constant companion on the road ahead.
To cope, allow whatever emotions arise, finding safe and non-hurtful ways to express sadness, anger, loss and frustration. Consider keeping a journal; it is cathartic to write and it helps you record the experience.
Make sure you care for yourself as well as your mom — eating healthily, getting adequate sleep and finding people who will listen, empathize and act as sounding boards. Remember: it is not your job to be perfect; it is your job to companion your mom to the best of your ability.
All of these steps can help you manage an Alzheimer’s diagnosis in the initial stages. The challenges will grow with the progression of the disease, but you will have a solid foundation on which to build as you slowly say goodbye and walk your mom through her illness.