Part of living well with Alzheimer’s is adjusting to your “new normal” and helping family and friends do the same. Knowing what to expect and what resources are available can make the process easier for you and those close to you.
Helping your spouse or partner
The news of your diagnosis may or may not be a surprise. As both of you come to terms with this huge change in your life together, your spouse or partner may feel a sense of loss or loneliness as a result of the diagnosis.
What you can do to help your spouse/partner:
The job of a care partner or caregiver is very challenging and can so often go unrewarded or underappreciated, so I make sure to thank my spouse for the things she does for me every day.
Jeff B., Living with Alzheimer's
- Continue participating in as many activities as you can with your partner. Adapt activities as needed to make them comfortable and enjoyable.
- Find new activities that you can do together. Also continue doing things you have always enjoyed as a couple.
- Talk with your spouse or partner about what kind of help you would like from him or her now. Also discuss what you can still do on your own.
- Work with your spouse or partner to put information you may need later regarding caregiver services and costs. Organize documents you may need into a file. When considering future services, include housekeeping and respite (caregiver relief) care. Start your search for local services, resources and programs by using our online Community Resource Finder.
- Discuss any role changes in the relationship with a professional counselor or clergy member. Include changes in your sexual feelings or ways of connecting.
- Share our Alzheimer's caregiving information. Your spouse or partner can learn more about caregiving issues and get tips.
- Attend early-stage and/or caregiver support groups through your local Alzheimer's Association. Sometimes befriending another couple in the same situation offers new possibilities for support.
- Connect with others. You and your spouse/partner can connect with others on our online message boards, ALZConnected. Also, stay connected with family and friends.
Helping your children or grandchildren
Younger children may be afraid that they will get the disease or that they did something to cause it. Teenagers may become resentful when they have to take on more responsibilities around the home, or they may feel embarrassed that their parent or grandparent is "different." College-bound children may be reluctant to leave home to attend school, or may create occasions to be angry to make it easier to separate and gain independence.
What you can do to help the children in your life:
- Talk openly about the changes you are experiencing because of your disease.
- Identify their emotional needs. Find ways to support them, such as meeting with a counselor specializing in treating families dealing with a chronic illness.
- Notify school social workers and teachers about your situation. Give them information about the disease. You can direct them to alz.org or give them educational brochures from your local Alzheimer's Association chapter.
- Don't pull away. Try to find activities you can still enjoy together. If you can't drive, plan a hike or bike ride. Check out local public transportation. Use our Community Resource Finder to search for local transportation services.
- Make it OK to laugh. Sometimes humor lightens the mood and makes coping easier. Celebrity Champion and comedian Chris Garcia describes how humor helped him and his family when his father, a Cuban refugee, developed Alzheimer's.
- Record your thoughts, feelings and wisdom in writing, audio or video. The children in your life will appreciate this when they grow older.
- Share our information in the Kids and Teens section. This is a place where your children or grandchildren can learn more about Alzheimer's.
Helping your friends
Friends, co-workers and neighbors may not understand what is happening to you. Sometimes they may not know what to do or say. They may keep their distance or resist keeping in touch. Or, they may be waiting for you to reach out to them.
- Share your experiences living with Alzheimer's.
- Tell them what you're still comfortable doing.
- Invite them to Alzheimer's Association education programs and events.
- Let them know when you need help and support — and what they can do to help. Then, when they offer, take them up on it!
You may find yourself making new friends as you engage with others who share your diagnosis. You may meet others through support groups, education programs, online message boards, volunteering and social programs.
When the adjustment process gets stuck
There are times when it may feel like family members or friends are not connecting with you — when your relationship feels stuck. In these situations, it may be that the person or your connection with each other is confronting an emotional challenge that feels overwhelming.
If this happens, there are some ways to help move the adjustment process along:
Maximize your independence
Develop strategies to help you live day by day.
- Speak honestly and frankly about your feelings. Acknowledge the importance of the relationship to you and your desire to go through this difficult time together.
- Try to listen to the other person's feelings. Respond as much as you can, while saving your concerns for another time. Both of you need to feel heard by the other, and sometimes taking turns being the "listener" can help.
- Focus on the positive changes you can make that might help you regain your sense of closeness.
- Take action. Make plans to do something that you both enjoy together.
- When friends and family get stuck in the adjustment process, help by directing them to our 24/7 Helpline (800.272.3900) to get advice, message boards to chat with others or in-person support groups.
- Consider bringing in a third party to help. Talking with a professional who has experience working with people facing chronic disease can help one or both of you deal with the impact of the disease. Contact your local Alzheimer's Association chapter to help locate professionals with this type of expertise.
- If you or a family member is experiencing depression or anxiety that seems to go beyond what feels normal, know that these are treatable conditions. There are professionals who can help. See symptoms of depression.