Anyone who has any experience with Alzheimer’s Disease will tell you it doesn’t just affect the patient. It affects the entire family. So, how do you talk to children about Alzheimer’s? What is important for them to know? Are there things you shouldn’t tell them? How do you help them cope with the impact of the disease on their lives?
These are all questions we were faced with while caring for my mother over the course of five to six years. My children were 11, 8, 6, and 2 when she was first diagnosed with dementia. Out of that experience, I offer the following tips. Hopefully they will provide a place to start if you’re looking for answers.
Put the Kids on a Need to Know Basis
At first, there wasn’t a whole lot to say, and the kids didn’t notice much of a change. It was early and they saw her several times a week, so decline was less noticeable. My mom was still living fairly independently. I just started keeping a closer eye on her and how things were going. By not sharing too much, too soon, you’ll prevent months of unnecessary worry on the part of the kids.
Keep it Simple and Age Appropriate
As time went on, and my involvement grew, the need for sharing information with them increased. I presented simple explanations for the simple things. “Granny is forgetful. I have to go over every day to make sure she takes her medicine.” or “Because Granny is forgetful, she will tell you things over and over. Please be patient with her and polite.” And, more detailed information for more complex issues like taking the car and the cigarettes away. In these cases, I explained the reasons why it was necessary to take the steps I took which were all directly related to her safety.
Let Them Help
Sometimes, the kids don’t have a choice. They’re not the decision makers on the big stuff. They’re along for the ride.
As the time when she would no longer be able to live independently approached, we began preparing them for the day when she would move in here with all of us. They were 13, 10, 8, and 4 then. Their world was going to be turned upside down. We had been in the middle of redoing the boys’ bedroom. We stopped midway through and turned it into a haven for my mom and the boys ended up with a makeshift bedroom in our basement.
I remember that conversation well. The boys and I were sitting on their beds in the basement and we talked about how it was going to be crowded and inconvenient, and hard, but that this is what families do for each other. When I mentioned that one day, the boys and their sisters may have to take care of their dad and me in a similar way, my oldest boy turned to his younger brother and said, “Yeah, that’s on you.” (That oldest boy, by the way, was the most patient and compassionate caregiver you would ever find when push came to shove.)
But, in other ways, they can help, they can have a voice, and they want to help. Look for opportunities to involve them in an age appropriate way. Older children can fix simple meals or snacks, or even help to feed their loved one. Younger children can read a story, sing a song, or work a puzzle. Anyone can offer a hand as the patient is moving from point A to point B.
Honor the Pre-Dementia Relationship
My children each had a unique relationship with their granny. When my oldest was 10 months old, she retired to take care of him while I worked full time. Each week, he spent more waking hours with her Monday through Friday than he did with his father and me. When she was with him, he was her sole focus. She didn’t clean, or pay bills, run errands or meet with friends. She poured her whole self into him all day long. A very special bond and many memories were created. Because he was the oldest, he has many more memories of her before the dementia than everyone else.
My second son had an equally special bond with her. She cared for him full time from birth until he was 2 1/2, and then part time when I reduced my work hours. But, he never had her all to himself.
By the time my oldest daughter was born, the first born was off to kindergarten and I was working part time. Due to the school bus schedule, the childcare moved from my mom’s house to our house. While my oldest daughter remembers her granny in those early years, she doesn’t have many memories of fun times at Granny’s house.
And, by the time the baby of the family came along, dementia was lurking in the shadows. My mom couldn’t take care of a baby anymore. Our youngest has no memories of “fun granny” as she put it in her funeral speech.
Especially, after she moved in with us, this history, these unique relationships, became vitally important. During the difficult times, we could reminisce about the things they used to do together whether it was walking to the store to get a donut in the morning, practicing their word-ring as she taught them to read, or a favorite book they shared. And, for the youngest, realizing she didn’t have that warm and fuzzy history to draw on made her utter exasperation and occasional outbursts understandable.
Nurture the Post-Dementia Relationship
Alzheimer’s Disease sufferers often find comfort and enjoyment being around young children and young children can still benefit from having a relationship with their elders. Encourage them to read books together or play simple games. Or to just cuddle. Although the memories of the Alzheimer’s sufferer are fading, new, fond memories can still be formed for the young people in their lives as evidenced by this excerpt of our 7 year old daughter’s speech at my mom’s funeral.
Even though I didn’t know the fun Granny, the cranky Granny was still fun. I loved her so much. There were good times and bad times. The good time was when she was reading books to me and then she helped me get a good grade. –, grand daughter of an Alzheimer’s Disease sufferer, age 7
Throughout the journey, keep the kids involved and the lines of communication open. Remember, it’s their journey, too.