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JOAN’S BLOG – FRIDAY, OCTOBER 31, 2008 – EOAD (Early Onset Alzheimer’s Disease) SPOUSES – THEIR EXTRA BURDEN – THE PLIGHT OF THE CHILDREN

As spouses of Alzheimer patients, we know that we live in an emotional minefield. Not only do we suffer the loss of our loving life partners a little piece at a time, but we are forced to pick up all household duties alone, as well as caring for an infant in an adult’s body. The task is overwhelming, sad, lonely, and full of anguish.

But I cannot imagine going through all of the emotional, physical, and financial stress that comes with the job of caring for an AD spouse, AND having to raise children at the same time. That is the extra burden carried by too many EOAD spouses with young children at home. This website has members who have children as young as 3 years old, and many with 10-14 year olds.

Although this website focuses on the relationship issues that Alzheimer’s Disease brings to a marriage, I am veering slightly in another direction today – the plight of these children. I am doing this because there is scant reporting and little to no resources to help these children cope, which adds to marital discord and the emotional pain of the well spouse. It is understandable that the problems of these children are under addressed, considering Alzheimer’s Disease is generally considered to strike people in their 70’s and 80’s, who certainly are not raising children anymore.

Yesterday, one of our members wrote that her ten-year old said that his “life sucks” because his father doesn’t know him, and he never sees his mother who works all of the time. I am acquainted with a woman whose teenage son cannot handle the decline of his 56 year-old father. The son closets himself in his room, and is of little help to his mother. I am aware of countless children who feel isolated, alone, and angry because who of their friends could possibly understand their plight? I do not need to tell any parent how difficult it is to cope with an angry, emotionally distraught child, but doing it when you are dealing with an AD spouse has to be a crushing burden.

I am currently aware of three resources to help children of an EOAD parent cope. The first is a website developed by one of these children. It is www.afateens.org. Yes, I understand that it is directed at teens, but it is just my opinion that younger children can benefit from the information and support it provides. Below is a sample from the website. Check it out and decide if you think it will be helpful to your child.

Sometimes I Feel?

Additional Support Topics

The second resource is therapy. Of course, you would need to find a therapist who has an expertise in dealing with children of parents with EOAD or at the very least children dealing with parents who have disabling, terminal illnesses. I would start by getting a referral from an Alzheimer’s Association social worker – 1-800-272-3900.

The third resource is a summer camp for children of parent’s with AD. Paul Newman developed the “Hole in the Wall Gang” camps for terminally ill children. Tracy Mobley, who was diagnosed with EOAD at age 38, and is now 44, developed “Camp Building Bridges” for children of parents with Alzheimer’s Disease. Please click the link and check it out.

Every difficult family problem challenges marital harmony. Alzheimer’s Disease is way up there at the top of the list, but when troubled children are added to the mix, the situation for the “well” spouse trying to deal with all of it, can be the emotional straw that breaks your coping ability.

I hope those of you who fall into this category, will take a look at www.afateens.org. and Camp Building Bridges. If, after previewing www.afateens.org for yourself, you feel it can help your child/teen, please introduce them to it.

Feedback to joan@thealzheimerspouse.com

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