Choosing when and with whom to share your dementia diagnosis is a very personal decision. There’s no set timeline or “right” way to do it, and will depend instead on your personal feelings, relationships and comfort level. Although your first reaction may be to keep the diagnosis secret, it is important to remember that sharing the news is the most important step you can take towards a better quality of life now and in the future. This is especially true for individuals who have adult children.
“As a parent, it’s normal to feel protective of your children and hesitate to share your diagnosis because you don’t want to worry them,” says Amanda Jillson, Executive Director at Bridges® by EPOCH at Nashua, a memory care assisted living community in Nashua, NH. “But by giving them the information and keeping them informed, you’re helping them understand and prepare for the future, while gaining the foundation of support and assistance you will need as this disease progresses.”
More than likely, your family already has an idea that something is happening with you. “Because of the way Alzheimer’s disease and other dementias affect the brain, the people around you are some of the first to notice things aren’t quite right – sometimes before even you notice them,” says Amanda. “While your diagnosis will still be life-changing, even if they already suspect, your adult children may find a sense of relief knowing what’s happening and what can be done about it.”
As your dementia progresses, you are going to require the support and assistance of people who understand and know you. You may have already discussed future plans with your adult children before this diagnosis, making dementia just another facet in your estate and end-of-life plans. By sharing your diagnosis, you’re giving everyone involved the ability and information to cope with what’s ahead.
Before Sharing Your Diagnosis
When you decide to share your diagnosis with your adult children, think about when to tell them your news. Do you want to share it right away so that you can process everything together? Would you prefer to wait until you’ve come to terms with the diagnosis and can better support your children with their reactions?
When you’ve decided the timing for sharing your diagnosis, think about how you want to tell them. If all your children live close, do you want to hold a gathering and tell them all at once when you’re together? Would you rather do it one-on-one, and if so, who would you tell first? As we’ve said before, there is no right or wrong way to share the diagnosis.
Next, what do you want to tell them during the conversation? It’s a good idea to spend some time crafting what you’re going to say – you can even write down your thoughts and talking points and bring them with you to the family meeting. You may want to think about and share ideas for future planning, or take the opportunity to explain more about your dementia, or suggest ways and ideas for how your adult children can help you now and in the future.
As you’re crafting your talking points, consider these questions in order to help each of your adult children understand and come to terms with your new diagnosis:
- How do I think my child will react to the diagnosis? If he or she reacts in an unexpected way, how will I feel and what should be my reaction?
- How do I want my children to treat me after they learn my diagnosis? While this will be life-changing, my needs will only gradually change. What do I want from my child now and in the future?
- What can I do to help my child absorb the diagnosis? What does he or she need from me immediately? What things can I provide to help inform them?
Tips for Sharing Your Dementia Diagnosis with Your Adult Children
- Take your time. You don’t have to get through everything in one sitting. It’s perfectly fine to have an ongoing conversation or revisit topics, especially if the conversation is becoming difficult or overwhelming.
- Provide educational information. There are many great websites with helpful information including the Alzheimer’s Association®. You can also ask Bridges® by EPOCH at Nashua for informational brochures or other materials to share with your adult children.
- Let your adult child know that the diagnosis doesn’t change who you are. Although you will go through many changes throughout the course of the disease, it’s important to stress (both for your adult child and you) that dementia doesn’t change who you are as a person.
- Let them know how they can help. Your adult child might want to jump right in and start “taking care of you.” Remind them that you are still able to do things and are functioning. It’s helpful to come up with some ideas of how he or she can assist you now so they feel like they’re doing something without steamrolling you.
Dealing with Reactions and Responses
Your adult children can react to your diagnosis in a number of different ways. They may be relieved, scared, frustrated, angry or even be in denial about the whole thing. Remember that you, too, went through a variety of different emotions and reactions when you learned about your diagnosis, and it’s natural that the people you love will experience similar reactions.
You may be surprised or caught off-guard by negative or unexpected reactions from your children. Denial, especially, is a very common reaction, as well as misunderstandings about what the disease entails. If your adult children react in these ways, it means that you may need to give them time to absorb and digest the news, as well as get more information about the subject.
Telling your adult children about your dementia diagnosis can be a scary and daunting thought. Remember that this will be just one of many conversations you’ll have in the upcoming years, and being honest and open will help everyone involved understand the situation and can even help strengthen your relationships.
If you would like more information about talking with your adult children about your dementia diagnosis, contact us at 603.594.0581.
A Fulfilling Lifestyle
Bridges® by EPOCH at Nashua provides assisted living memory care that is comfortable, positive, safe and engaging. Exclusively dedicated to caring for those with Alzheimer’s disease and other forms of dementia or memory impairment, we’ve created a wellness-focused lifestyle that promotes dignity and individual preferences. Our memory care professionals receive specialized and ongoing training designed to help residents maximize their independence in a secure, calm environment – making a truly positive impact on the lives of our residents each and every day.
Many Services, One Monthly Fee
Our dedicated memory care and services celebrate life and support each resident’s individual strengths. No matter what stage of memory loss a resident may be experiencing, their family can be sure that with us, their loved one is safe, secure and happy.
Stunning, Purpose-Built Design
Featuring a stunning, purposeful design, Bridges® by EPOCH at Nashua is so much more than a beautiful place to live . . . It’s a community with a singular focus: enrich the lives of our residents and help their families enjoy meaningful relationships with them. Our evidence-based design features attributes that make life easier for those with memory loss: soft colors, directional cues, aromatherapy and interactive life stations.
Call us today at 603.594.0581 to learn more about Bridges® by EPOCH at Nashua or to schedule a personal tour.