Alzheimer's Disease

Dear ParentLine:

My two children have enjoyed very close and happy relationships with all four of their grandparents. Over the past year, our family has seen marked changes in my 84-yr-old mother. Last week, after a visit to her physician, we learned that she has Alzheimer’s disease. Our family is devastated, particularly the children. What can I do to help them deal with what is happening?

Signed, A Mom in the Middle in Merrimack County, NH

ParentLine can only offer a very simple and heartfelt suggestion for such a difficult situation. Be open. Talk with your kids and encourage them to talk with you. Doctors, patients, and their loved ones know that Alzheimer’s is a confusing and sometimes frightening disease. It can be even harder and more confusing for children to understand what’s going on as their loved one’s disease progresses.

Though your family’s distraught, don’t hide what’s going on from the children, no matter how tough things get. Kids come equipped with radar they use to tune into even the most subtle of family dynamics. Plus, kids have great imaginations. If you’re honest with them, you spare them from making a meaning that may be even scarier than the reality they face. A child who’s trusted with a truth lovingly told develops into a very different person from the child from whom the truth is withheld.

Keep in mind that your kids will react differently based on their age and stage of development, their personality, and how important the person with Alzheimer’s disease is to them. Remember that the degree to which children and teens are affected by the disease depends on how close the child or teen is to the person and where the person lives (in the same home, nursing facility, out-of-state, etc.). The Alzheimer’s Association (www.alz.org) suggests that children and teens may have the following feelings as they deal with a loved one who has Alzheimer’s disease:

Sad about changes in a loved one’s personality and behavior
Confused about how people get the disease and why the person behaves differently
Afraid of the behaviors that the person exhibits
Worried that they or their parents might develop the disease
Angry and frustrated by the need to repeat activities or questions
Guilty for getting angry or being short-tempered with the person
Jealous and resentful because of the increased amount of time and attention that is given to the person with Alzheimer’s
Embarrassed to have friends or other visitors to the house

Be aware that your children may resent the extra time and attention their grandmother needs. They may be hurt that she can no longer remember and be annoyed or impatient with her repeated questions. Your kids may not be able to verbalize what they are feeling. The Alzheimer’s Association says that children and teens can exhibit the following emotions in ways you may not easily recognize.

Verbalize vague physical complaints, such as a stomachache or headache
Perform poorly in school
Spend more time away from home
Stop inviting friends to the house

Help your kids to understand that even though they are ‘caught’ in a situation over which they have no control, they can decide how this situation will affect their lives.

It’s important to help them understand that because of the disease; their grandmother may sometimes do and say things that are out of character. Reassure your children that your mother does love them even though she may have difficulty expressing her feelings. If your children are not able to talk to you about how they are feeling, help them to find another trusted adult -a teacher, perhaps – or encourage the children to record their feelings in a diary or journal. The Alzheimer’s Association offers the following ways to help children and teens cope:

Maintain open lines of communication
Offer comfort and support
Provide opportunities for them to express their feelings
Let them know their feelings are normal
Educate them about the disease and encourage them to ask questions
Respond honestly to their questions

As your family works to adapt to and accommodate the changes in your mother’s life, it’s important for your family to share tasks and activities. If possible, engage your mother in these activities, to the degree she’s able to participate. Though these activities may have to be limited or modified by the progression of the disease, they will serve a dual purpose. Not only does your mom need the continued love and affection of her family, but also your children need to learn that love is not conditional; that love and affection are not withdrawn when someone becomes seriously ill. The Alzheimer’s Association suggests the following activities that families can do together:

Go for a walk.
Do household chores together, such as folding laundry, raking leaves, or washing dishes.
Listen to music, dance, or sing. Engage Grandma to find out what her musical memories are. A younger child might read a favorite story aloud to your mother. The entire family can enjoy simple games, such as Chutes and Ladders.
Look at old photographs. Keep a family journal. Make a family tree. Develop a memory book about your mother. You might include old postcards and letters, ticket stubs from a special trip or play, or anything else that triggers memories and encourages sharing of those memories.

For more information or just someone to talk to, call the Alzheimer’s Association at 1-800-272-3900; New Hampshire office of the Alzheimer's Association, 603.606.6590; visit www.alz.org/nh or email info@alz.org.

ParentLine is a free and confidential service of Child and Family Services, a statewide, independent, nonprofit organization dedicated to advancing the well-being of children and families. Call ParentLine, 1-800-640-6486; write ParentLine, c/o Child and Family Services, P.O. Box 448, Manchester, NH; email parentline@cfsnh.org or visit our website at www.cfsnh.org.