JOAN’S WEEKEND BLOG, JUNE 4-6, 2010 – INFORMATION FROM THE CONFERENCE – HELP FOR TEENS AND CHILDREN LIVING WITH YOUR AD SPOUSE

No one has to tell us what a shock it is to suddenly be living with a stranger who is housed in our spouse’s body. We were all bewildered, surprised, emotionally hurt, and totally confused when our loving spouses suddenly could not understand our directions, could not remember how to perform their job properly, lashed out verbally at us. In addition to bearing the burden of losing our lovers and partners, we had to take on more of the physical and mental responsibilities that we used to share with our spouses.

We have discussed how difficult, lonely, isolating, and sorrowful both the loss of the person we knew, as well as the burden of caregiving duties, can be. In the beginning, we had no idea what was happening or where to turn for support and education. We read books, talked to doctors, social workers, joined this website, joined face-to-face support groups. As adults, we educated ourselves and sought support from peers (other spouses) going through the same trials.

If the situation was that difficult for us, what about our children and grandchildren? Those of you who have spouses with Young Onset Alzheimer’s Disease have children and teens at home who are experiencing emotions similar to yours – loss and confusion.  Many of them are helping with caregiving duties. Some of them are experiencing emotional problems – withdrawal, anger, resentment, falling grades. Some of them are having difficulty getting along with the AD parent.  Most of them have nowhere to turn for peer support and information.

Yesterday, at the Alzheimer’s Community Care Educational Conference in West Palm Beach, Florida, I attended a break-out session presented by two remarkable women -Cristy Kovach Hom, LCSW and Karen Harwood, MSW. Both work for the The Caregiving Youth Project (of Palm Beach County) under the auspices of The American Association of Caregiving Youth. The Caregiving Youth Project is the “first program of its kind in the US to identify, recognize and support youth who care for ill, aging or disabled family members.” Their organization provides support in school, out of school, and at home for caregiving youth. They provide connection with caregiving peers, connections to community resources, academic support, offer respite, empathetic listening and recreation, educate about the illness, and encourage expression of feelings,

Although the emphasis of yesterday’s presentation was on youth who provide hands-on caregiving, the type of support provided by this organization can be valuable to children and adolescents who may not be bearing the full burden of physical caregiving, but are certainly experiencing the stress and anxiety of living with an AD parent.

Cristy and Karen will be writing a blog for this website soon, but for now, I encourage you to log onto www.aacy.org and www.cyppb.org  to read about the programs. Many of our members have written to discuss the problems their children are experiencing living in an AD household, and have asked for help and advice. These websites are a starting point. In future blogs, we will discuss how you can help bring a program similar to Palm Beach’s “The Caregiving Youth Project” to your area.

MESSAGE BOARD TOPIC: Help for children living in AD households.

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The Alzheimer Spouse LLC
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