Sign up for this email series:
We all respond differently to information about our health. After learning your spouse, parent, or family member has Alzheimer's disease, you might be stunned, scared, or even relieved to have answers that explain memory loss, inability to focus, or personality changes. No matter what you’re feeling, you’re not alone. On myALZteam, there are thousands of others who have been in your shoes.
You can’t figure out everything about Alzheimer's at once, and you don’t need to. Taking small steps to adjust to your new reality as a caregiver can be empowering in a time of major change. According to the American Psychological Association, active coping strategies like getting organized and making a plan for managing your loved one's health can improve your mental and emotional well-being.
Create Space for Alzheimer's
It’s normal to feel out of control when you first learn your loved one has Alzheimer's. You may have a pile of pamphlets crowding your kitchen table and a head full of questions that you forget the moment you set foot in a doctor’s office. You can begin to tame the chaos by implementing very simple organizational techniques that will help you create space for this new aspect of your life.
Put Everything in One Place
Storing all of your printed doctor’s visit summaries, pamphlets about Alzheimer's, and other resources in a designated spot can help create some order and help you find information when you need it. You don’t need a fancy filing system - a kitchen drawer, an old binder, or simply an orderly stack on your bedside table can make a big difference. In addition to helping you keep track of important papers, there is evidence that controlling clutter is associated with better moods.
Remember Your Questions
Keep a list of questions about Alzheimer's for your family member's healthcare provider in a dedicated notebook or on your smartphone. Jot down your questions as you think of them and bring your list to appointments so you can remember your questions and write down the answers.
Manage Your Loved One's Appointments
If you already rely on a digital calendar or paper planner to manage work and family obligations, stick with that method for managing any new doctor’s visits. If keeping a calendar is new to you, consider using what you’ve already got at home, such as a grocery list notepad or a piece of paper and a magnet on the fridge. You can also ask your doctor’s office about phone call or text message reminders that can help you keep on top of appointments.
Using an old-fashioned pill organizer is a great way to keep track of your spouse or family member's oral medication regimen. You can also use a paper medication tracker. If you’re comfortable using a smartphone, consider downloading a medication tracking app to help with this aspect of caregiving.
Reach Out for Support
It can feel overwhelming to reach out after your loved one receives an Alzheimer's diagnosis, but you don’t have to face this diagnosis alone. Support from loved ones, your family member's medical team, and other people who care for someone with Alzheimer's is crucial as you adjust to your new normal. There are a few basic steps you can take to start building your network of support.
You may not be ready to talk about your loved one's diagnosis with other family or friends right away. You may also not have time or be comfortable joining an in-person caregivers support group. That’s ok. Connecting with members on myALZteam can be a first step towards finding support. Your community on myALZteam can provide an ongoing emotional boost whenever you feel worried or overwhelmed about caring for someone with Alzheimer's or want to celebrate a victory.
Many hospitals and medical practices offer resources that extend beyond medical appointments. These may include chaplaincy services, health education classes, patient liaisons or nurse navigators, on-site support groups, and referrals to other services.
Friends and Family
Sharing your loved one's Alzheimer's diagnosis with friends and family can be hard. They may be afraid and struggle to react in a helpful way. Try to remember that everyone is doing their best with difficult news. If you’re able, let your loved ones know how they can be most helpful to you and your family member facing Alzheimer's, whether that’s helping with household chores or offering a listening ear.
Learn More About Alzheimer's
You might not have known much about Alzheimer's before your family member received a diagnosis, but now you probably want to learn more. Your loved one's healthcare provider is a great resource for information, but you may also want to do your own research. Remember to be cautious of what you read online, especially if someone is offering a quick fix or selling a cure. You can always reach out to the healthcare provider or patient liaison if you have questions about something you’ve read.
Here are a few resources to get you started:
You never have to feel alone when you’re caring for someone with Alzheimer's. Members on myALZteam are always available to answer questions and offer encouragement when things get rough.
Here are some conversations from myALZteam members about facing a new diagnosis:
If you have a pressing question, you can go straight to the Q+A section.
You can also read more about how to get started on myALZteam.
For new caregivers, what information are you seeking?
For the Alzheimer's veterans, what do you wish you knew when your loved one was first diagnosed? Share in the comments below or directly on myALZteam.