Last week, I suggested resources to help you explain Alzheimer’s disease and other dementias to your children. (What’s Happening to Grandpa? by Maria Schriver and Sandra Spiedel and http://www.alz.org/living_with_alzheimers_just_for_kids_and_teens.asp .xt,) but no matter what resources you find, the first line of defense for your kids is YOU.
1) Help them have good times with the senior. Supervise the kids and seniors in calm, fun, and brief activities like folding laundry, snapping beans, doing large-piece puzzles, looking at family pictures, or telling old family stories.
2) Understand that the senior’s babysitting days are over. People with dementia are unpredictable and incapable. When my mother set my stove on fire, my five year-old son grabbed the fire extinguisher and yelled for my husband and me. Even though the smoke detectors were blaring, Mother just stood there, staring at the flames, saying, “Why is this happening?” If Mother had been alone with my kids, it’s likely that all of them would have died. My son would have spent way too much time trying to convince his grandmother to leave the house and at five, he could not have gotten his baby sister out. When someone with dementia is with children, the children are in charge.
3) Understand that kids aren’t caregivers, either. It’s good for kids to learn that families should look out for each other, but children should not be primary caregivers. Let kids be kids. There’s no harm in having them pick up groceries, do laundry, clean the bathrooms, or make the occasional simple meal. They should not miss basketball practice, drama club, or hanging out with friends to take watch Grandpa.
4) Assign an adult to supervise the senior during chaotic times. When there are a lot of people around, a lot of noise, or activity, Grandma’s agitation can get out of hand. Vulnerable times might be: getting everybody up and out in the morning, or coming home from work to deal with dinner, homework, and bedtime. Family gatherings like weddings and reunions are notorious agitators. Ask yourself why Grandma needs to be there. Is it for her, or for you? If you decide against having someone care for her at home, choose a non-family member to attend the party with her. You might have to hire someone, but at least, that person won’t will feel slighted if she has to leave the party to calm Grandma down.
5) If you have to choose between seniors and kids, choose the kids.
When my daughter was eighteen months-old and in the hospital, my husband and I decided that she should see familiar faces as much as possible. On one visit, Mother decided to walk outside the hospital to smoke. She couldn’t communicate well enough to let anyone know where she was supposed to be. Mother also thought she knew everyone; she’d open her purse and start doling out money. I had to make a decision.
Mother was about to get herself killed, but my daughter was surrounded by nurses. The baby might be scared, but she’d be safe. I walked Mother outside. The next day, I arranged for her to go back to Philadelphia where there were more family members to share her care. I never wanted to have to choose between my mother and my children again.
In 2015, none of the medicines used for dementia actually affect the disease process. This means that dementia is a terminal illness. No matter what you do, you cannot change your senior’s future, but your child will be somebody’s mom. Your children will be citizens, spouses, employers, and employees. The environment in which you raise them WILL change their futures. Invest in the children and don’t feel guilty.
As dementia progresses, the senior’s needs can threaten to overwhelm family resources; disturbing behaviors may threaten everyone’s peace, and even their safety. This is one of the major reasons that families agonize over nursing home placement.
Next week- The Nursing Home Decision