The common perception is that dementia is a disease of old age. That is not always the case. Dementia can be caused by head injuries and stroke – as well as by various diseases like Parkinson’s, Alzheimer’s, and Huntington’s, which are known to afflict those in their 30’s and 40’s. This translates to the possibility of teenagers living with a parent who is suffering from dementia. Surviving the teenage years of children can be hard enough on a parent; throw in a spouse with dementia and you’ve got yourself a pot of boiling stress and anxiety for a caregiver. It can be a heavy load to carry when everyone is relying on you for essentially everything from finances to nurturing and support.
First things first: just how do you go about telling your kids that a loved one has dementia?
Don’t delay in an effort to protect the kids. By the time a diagnosis has been made, they have more than likely noticed some strange behavior. The kids will probably feel relieved to know the underlying cause of that strange behavior. Having an open conversation that allows them to express their emotions and feelings is best. Explain the basics and give them the chance to ask questions. They will guide you in terms of how much they want to know and how much they can handle. Reassure the kids that you have support systems in place and that, while this is an unfortunate set of circumstances that will be difficult to navigate, you will manage just fine. You may feel the need to ensure that they spend as much time together as possible, but be aware that this could lead to additional stress and frustration. Instead, encourage them to engage in activities that might relieve the tension of communicating, such as watching movies, taking walks, playing chess, or watching family home videos that refresh memories.
What do your kids need from you?
The kids need to know that you are going to be okay. If you wear stress on your sleeve, they are going to see it and feel more insecure about the situation. This will cause them to drift away. Not wanting to create additional stress, they will more than likely refrain from approaching you. Take care of yourself so that you can remain balanced and patient. Don’t feel guilty about taking some time for yourself; instead, realize the value of alone time. It will set a good example for your kids, and demonstrate how important it is to have an outlet or hobby that soothes you. You are no good to others unless you are good to yourself.
It is acceptable for your kids to occasionally witness your pain and grief. It sends the message that they can do the same. However, try to limit break-down incidents as much as possible as it can frighten kids who look to you for guidance.
Check-in on your kids once a week.
It could be a weekly family dinner or a simple conversation before you hit the hay at night. Ask them how they are doing, if they have any questions or need anything from you. Establish open communication and support by telling the kids that you are available at any time to talk or listen. Actions speak louder than words, so follow through on the promise if and when they need to be heard. Confirm your support by taking time out to attend their school events. Hug them – they may shy away, but a simple hug can actually help them feel comforted and loved. Asking them to help you with something technical can often be a good opportunity to spark a conversation if you find the process difficult or if they are acting distant.
Reinforce specific messages.
Everyone feels the same emotions of sadness, guilt, anger, shame, resentment, confusion, fear and frustration – they are not alone. It is normal and completely acceptable. There is no right or wrong way to react to the complex situation. The kids need to hear these messages frequently.
Empower friends and family.
Don’t try to be the hero; let others, including your kids, lend a helping hand. This will ease your stress as well as empower friends and family to be an active participant of the team. If friends offer to assist, accept it; tell them what you need and ask if they are willing to do it. Don’t demand that your kids do specific household chores or take on care giving roles; instead, ask them to devise a plan that will work for everyone. Believe it or not, taking out the trash, filling a weekly pill box, preparing dinner, or grabbing some groceries can improve a familial experience on an emotional and logistical level.
Don’t limit their activities.
Make sure the kids stay involved in extracurricular activities – even if it means arranging for alternate transportation. It is important for them to have a healthy escape from the challenges they face at home – as well as activities that promote and build their identity. Forcing them to give up an activity they love will only cause resentment and additional stress.
Find a psychologist or family therapist who is available to help if necessary. Talk to your kids about therapy and its benefits. Make sure they know therapy is an option on the table if they want or need to express their feelings and emotions to someone other than you. Providing them with a strong support system of family, friends, and possibly therapy will facilitate a healthy disposition for them and you through the ups and downs of your challenging situation.
Information taken fromhttp://www.lifeandminds.ca/whendementiaisinthehouse/
Carrie Robertson
Research & Community Education