From the book.."The 36 Hour Day"...by Nancy Mace, M.A. and Peter Rabins, M.D., M.P.H
A family guide for caring for those with any form of dementia.
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"Children and their parent with AD"
It is good to remember children have a relationship with the sick parent or grandparent. They have complex feelings they may not have expressed about the illness. Children are are usually aware of what is going on and, even when things are concealed from them, children often sense something is wrong. Fortunately, children are marvelously resilient. It helps them to not be frighten when given an honest explanation of what is happening to their loved one with dementing illness..explained to them in language they can understand. Reassure them that the illness is not catching and nothing that they did caused it to happen.
It is usually best to involve the children in what is happening in the family and even to find ways for them to help. Always reassuring them that this is an illness and their loved one can not control some of their behaviors. It is important that they feel they can come to their parent who is not ill with questions that will be answered.
Children from ages 10 to 16 share the following thoughts based on their own experiences.
*Don't assume you know what your child is thinking.
*Children even small children always feel pity, sadness and sympathy.
*Make an effort to involve all of the children equally in the persons care. Children can find it hard to be depended on or they can feel left out. Sharing in the care gives them a sense of responsibility and that they are each one an important part of the family.
*The parent close to the sick person needs to be aware of her children's feelings and of how her grief and stress may be effecting the children. Understandably the parent may be so overwhelmed by their own troubles that they sometimes forget the children.( from me..this is why it is so very important to have a support team of family members and friends..so everyone needs will be met. One parent can not possibly be a caregiver and a parent alone..it will be just too overwhelming. Ask your Alzheimer's Association of a support group in your town for adults and children/teens. Being around others who are living with this disease as a family will be a huge support to you and your family. You need to know your not alone and there is help for you and perhaps you can help others as well)
*The effects of the illness linger long after the confused person has gone to a care home. Get together with the children after wards and continue to discuss things and why a care home was needed and how they can continue to be a part of their ill parents life.
"Teens"..
Teens may be embarrassed by "odd" behavior, reluctant to bring friends home, resentful of the demands made on you by the confused parent, or hurt by the persons failure to remember them. Adolescents can also be extraordinarily compassionate, supportive, responsible and altruistic. They often have an unspoiled sense of humanitarianism and kindness which is refreshing and helpful.
Certainly they will have mixed feelings. Like you, they may experience the grief of seeing someone they love change drastically at the same time that they may feel resentful or embarrassed. Mixed feeling often lead to mixed actions that are often puzzling to other family members. Teen years can be hard for young people, whether there are problems at home or not. However many adults looking back, recognize that sharing in family problems helped them become mature adults.
Be sure your teen understands what is going on. Be honest with him. Explanations, given gently, help a lot. Involve the adolescent in the family discussions, groups and conferences with health professionals so they, too, know what is happening. Take time away from the sick person, when you are not exhausted or cross, to maintain a good relationship with your children and to listen to their interests. Remember that he has a life apart from this illness and situation. Try at some time to find space for his teenage friends apart from the illness of their parent. (But also encourage them to share some of the better times and days with their loved one and friends so they feel their parent is still a part of his life.)
When the ill person has adolescent children, these young people are loosing a parent at a critical time in their lives. At the same time they must cope with the illness and the never-ending problems.
They can also feel they are loosing the remaining parent if that person is distracted by grief and fully occupied with care giving.
In this situation you face almost insurmountable burdens. You must arrange for enough help to maintain your own physical and mental health and to continue to assist your children. Sometimes your teen may be more comfortable to talk with an outsider than a parent ask an relative or teacher, church member to assume the role of "special friend".
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I hope these excerpts from the book will be helpful to parents of children whose parent may have some form of dementia. I personally found this book to be very helpful as my role as a caregiver perhaps you may consider getting it..the book covers many areas of care giving that you may have not even envision.
As I read all that a care giver parent must endure I do wish to say my heart goes out to you. Your very special in every way and do take care of your self for your needs are important also. Always know your doing the best that you can and no one can ask for more...to give yourself permissive to cry ..to hurt..to be human.
My prayers and encouraging HUGS..alice
I am no longer able to hold your hand my beloved but I cherish the remembrance of your hand in mine...and the wonderful person that touched so many lives with joy. : )