I worship the ground my daughters walk on. Their entire lives they have been an enormous source of pride. Over the years that I have worked and consulted with families dealing with Alzheimer’s disease, I’ll confess that I have asked myself on more than one occasion, “what kind of impact would it have if I were to develop a diagnosis of Alzheimer’s dementia?” As I’ve shared before, Alzheimer’s is no respecter of persons, and just because I have literally written a book on the subject, it isn’t going to allow me to dodge that proverbial bullet.
As painful as it would be for me to lose those wonderful memories of daughter Robyn’s first steps into my arms, the love and pride their mother and I had when we walked our girls down the aisle, or daughter Ebbie’s joy in telling us she was going to be blessing us with her first child and our third granddaughter, I can’t imagine what it would be like for them to walk into a room and realize I didn’t recognize them.
Over the years I have seen sons and daughters “go to pieces” when they learned what was ahead for their parent(s); and these children were mature adults. Imagine what it’s like for the grandchildren who may be all of 5, 9 or 14 years of age. And how do you explain to them what’s happening or why it’s happening? One of the easiest ways to have them understand is to use the example of being in a foreign country and not understanding the language. Because of the illness, they often aren’t able to understand what’s going on, just as if their teacher started to talk to them in a different language. How would they feel? Confused, angry, frustrated.
It’s critical that everyone is on the same page and this is particularly important when it comes to the children or grandchildren. Honesty is always the best policy and your conversations should always be age-appropriate. A 16-year-old will understand the impact of plaques and tangles on brain cells much better than any 7-year-old. As with your afflicted loved one, you need to be patient with your children and be patient as situations may require you to explain what’s happening at a particular time. “Why is Grandad eating with his hands?” “Mommy, how come he keeps calling you Grandma’s name?”
It’s also important to be sensitive to the many emotions that children are experiencing. They could be sad as they watch personality and behaviors change. Strange behaviors can cause them to be afraid. They could be concerned that Mom or Dad might come down with the disease; they may feel guilty for having little tolerance with some of the behaviors that a grandparent displays, such as constant repetition, and they may even feel embarrassed to have friends over to the house.
By the way, how many of you are aware of what the “bad guys” are called in the Harry Potter series? The black ghosts that suck the soul out of you are called … Dementors. It’s not much of a leap from Dementors to dementia in the mind of a child.
Again, try to be as honest and open with your children as you can. Encourage them to ask questions by letting them know that you want them to understand what’s happening. Don’t be afraid to ask them to help. I have met very few individuals with Alzheimer’s who didn’t love children. As is the case with any adult caregiver, companion or guest, make sure that the children understand those things that your loved one may find upsetting. If the child gets upset, when the opportunity presents itself later, talk with them about it. It’s all part of earning your “sandwich generation” stripes.
For more information you can go to ALZ.ORG and search the “Kids and Teens” section. Questions? Email me at repe@careforcare.yabanjin.com. Remember, Join the Journey.
Robert E.P. Elmer III, of Stonington, is a senior care adviser and Alzheimer’s care specialist. His website is at www.careforcaregivers.org.