It can be difficult to discern when or how to reveal your Alzheimer's diagnosis to close family members. It might be helpful to write your thoughts down before talking with anyone.
When you are emotionally ready, set aside an appropriate time and a place to meet in private so you and your family members can speak and respond freely. Let your family know in advance that you have something important to discuss with them.
Telling your family about your diagnosis is an important part of coping with it. You want your family to know so it can support and assist you as you navigate the journey.
Try to be well-informed about the disease so you can explain it thoroughly to your family members. Have educational materials or tips sheets available to share with them. The more they know and learn about Alzheimer’s, the more comfortable they may feel around you.
Be open and honest and allow them to be the same without judgment and give them time to react and process what you are telling them. The uncertainty of the disease makes it difficult to predict how anyone will respond, so patience and understanding should guide the conversations.
Most likely after being told of your diagnosis, family members will have many questions and have concerns about how they should act around you. Though relationships may change as the disease progresses, you will want to focus on the positive and assure them of your wishes and desires.
You will want to hold conversations about your preferences for future health care needs and about establishing legal safeguards, like durable powers of attorney and other imminent financial decisions. When conversations get heavy or anxieties reach a peak or if you get overwhelmed, take a break and perhaps consider convening at a later time so everyone can absorb everything that has been said.
Once your diagnosis is disclosed, your family members and then your friends will have to face the harsh reality that accompanies Alzheimer’s disease.
Realize that those close to you might not have the reaction you had hoped for or can give the support you want, but you cannot control how they react.
Many people are uncomfortable with the disease, fear it and don’t really know how to handle it. Author Carol Bradley Bursack, founder of Minding Our Elders Caregiver Support, notes that “people begin to stay away, not because they’re bad people. It takes a very strong person to continue to keep visiting someone who may get so they don’t remember you, who can’t remember the same things you remember. It takes a lot of dedication. That doesn’t mean that they think any less of you. They’re simply hurting for you and hurting for themselves.”
In the long run, be gentle and patient with others and be especially the same with yourself.