Telling loved ones about your dementia diagnosis is not an easy task. It’s a life-changing situation that carries a lot of different emotions. It’s hard enough telling adult children the situation … but what about grandchildren?
“Telling a grandchild or another young person that you have dementia may be something you’re dreading the most,” says Devon Sicard, Executive Director of Bridges® by EPOCH at Pembroke, a memory care assisted living community in Pembroke, MA. “You may even want to hide the truth from them or tell them white lies about what’s happening to protect them from the reality for as long as possible. But, really, it’s important to tell children about a diagnosis early on in the process.”
While we often think that young children are oblivious to more “adult” things that are going on, Devon says that kids are a lot more intelligent and perceptive than we may think. “Kids can tell when there’s tension, sadness or stress occurring, even if they don’t say anything about it or talk about it,” she says. “They know something’s wrong, and just like for adults, not knowing what’s happening can be scary and stressful for them as well.”
In fact, she says, telling children about a dementia diagnosis can be a relief for them because they will know why their older family members are acting the way they are. “Just like adults, kids worry and can imagine the worst of a situation,” she says. “If the information is presented to them in an age-appropriate way, they can cope with the truth and will be able to process and deal with it in their own way.”
It’s very important, says Devon, to tell your grandchildren before things progress too far, especially if the rest of the family knows about it. “If you wait to tell grandchildren, they may see it as keeping a secret from them, which can cause a lot of tension,” she says. “Not only will they have to deal with what they see as a betrayal, but then they will have to go through the grieving and acceptance process of your disease. It’s far better to share the information with them so they can walk the journey with you. Because dementia is a progressive disease, there will still be opportunities to spend time with them and for them to understand the diagnosis.”
Tips for Telling Grandchildren About Your Diagnosis
1. Be clear and use age-appropriate language. If your grandchildren are little, they may not be able to understand “dementia” or “Alzheimer’s disease.” Instead, you can talk about “memory problems” that you’re having and that you will be forgetting things and maybe acting a little unusual. Older children and teenagers are able to grasp the more complex subjects of the disease.
2. Anticipate that there will be questions – ones that you might not expect. Children see the world a little differently than adults do, and some of the questions they may ask can surprise you. “Can I get it?” is one question children often ask, because they wonder if they can “catch” dementia from you. “Is it my fault?” is another surprising question – children can blame themselves when something bad happens. Be prepared for just about anything. Be honest with your answers. Remember that “I don’t know” is a perfectly valid response.
3. Let them know what to expect. More than likely, your grandchildren have noticed that things seem “off” about the way you’ve been acting. It’s important not to scare them about what will happen to you, but it is important for them to know, for example, that you may forget their name sometimes, or you may have difficulty remembering words or you’ll need help finding your glasses, even if they’re on top of your head.
4. Ask for their help. This doesn’t mean that you’re putting a lot of responsibility on the kids. It simply means that you can share with them some easy ways that they can help you throughout this process. For example, you might need some help putting your shoes on, or getting a snack. You can also ask for their patience and understanding, because you can behave in different ways than “normal.” Children like to know that they’re helping, even if it’s in the smallest of ways. Perhaps they could read to you or play games with you – that’s always fun.
5. Tell them that you are the same person and you still love them. As much as possible (and as often as possible), remind your grandchildren how much you love them. Let them know that the way you will be acting is because of the disease, not because you are changing as a person. You can tell them that although there will be changes, they won’t happen right away, and that there are still plenty of ways and times you can visit and interact and enjoy their company.
Although a dementia diagnosis is very serious, Devon says to take heart. “Many adult children of people with dementia state that children, younger children especially, can adapt very quickly to the reality of the situation and actually interact better with their grandparents than their parents do,” she says. “As someone with dementia progresses, they can become more childlike in their approach, and in a sense it’s easier for kids to understand the way they are. This can be a beautiful gift, not just to your loved one with dementia, but for the children, too. Letting kids know about the diagnosis means they’re able to play a part in creating fulfilling moments and meaningful memories throughout the journey.”
Expert, Life-Enriching Memory Care
Bridges® by EPOCH at Pembroke provides memory care assisted living that is comfortable, positive, safe and engaging. Exclusively dedicated to caring for those with Alzheimer’s disease and other forms of dementia, our community promotes a wellness-focused lifestyle that emphasizes dignity and individual preferences. Our memory care professionals receive specialized, 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.
Inspiring Programs for All Stages
Bridges® by EPOCH at Pembroke’s services are designed to recognize and adapt to the unique challenges and individuality of each resident, while ensuring comfort and safety. We believe in a full-service approach to care and provide personalized attention and programming for residents in every stage of memory loss.
Purposefully Designed Community
Within a beautiful residential design, Bridges® by EPOCH at Pembroke provides everything residents with Alzheimer’s disease and other forms of dementia need to enjoy comfort, familiarity and security. Soft colors, directional cues, aromatherapy and interactive life stations create a soothing and secure environment where residents feel at home.
Contact us today to learn more.