“EARLY ONSET ALZHEIMER’S DISEASE” (EOAD)– A DIAGNOSIS BEFORE AGE 65. It is the same old dilemma that occurs when we speak of the rise in Autism,  ADD,  and learning disabilities – Is it because there is an explosion of these cases, or is it because the testing and evaluation  processes are so much better? There is no definitive answer to that question, but the end result is that we are hearing more and more about EOAD, which brings its own special problems and stresses for the spouse.

I have been contacted by spouses as young as 38 with children at home as young as 9 years old; many of you have teenagers  (YIKES! That’s a whole story in itself.)

So here are the cards you, the young spouse have been dealt :

• Marital stress we have discussed – the pain and sadness of losing the lover and partner you knew; the resentment of having to “do it all”, because your spouse is no longer capable; the loneliness of having no one with whom to carry on a coherent conversation; the difficulty of adjusting to the mood swings and behavior problems of the AD afflicted spouse. 

• The stress and anxiety of bringing up children alone, as a “single parent.” You have to be the chauffeur, disciplinarian, cook, cleaner, mother, father, psychologist, homework helper, bill payer, chief breadwinner, medical organizer for the kids AND your spouse………..does the list ever end?  Let’s not forget that now there is another child in the mix – your AD spouse.

• More stress in dealing with how each child is affected by watching the deterioration of one of his parents. How to explain Alzheimer’s Disease to a child or teenager? 

Now, what can we do to relieve some of this pressure, anxiety, and tension? ASK FOR HELP  EVERYWHERE IT IS AVAILABLE, AND IF IT IS NOT AVAILABLE, LOBBY FOR IT.

• Contact the Alzheimer’s Association in your area. Go to www.alz.org. Click on “In My Community”. Click on your State.  There will be a long list of area chapters, addresses, and phone numbers. Call and explain that you need resources for EOAD, especially emphasizing that you need special resources for your children, such as informational seminars and support groups. Explain that you need information for young children and their AD parent, not grandparent. The issues are different. (Where have you heard that before?) 

2.When you call your local chapter, make contact with a specific social worker, not just someone who answers the phone – Ask for “home services”. We have an agency in our area that sends social workers right to the home to help deal with problems.

3.Call the Alzheimer’s Association Hotline - 1.800.272.3900,  and ask specifically for help related to EOAD.

     4.Talk to your spouse’s neurologist – He/she may know of resources available in your area.

     5. Go to www.alz.org. Click on Living With Alzheimer’s; under that heading, click on Just for Kids and Teens. There is some very useful information explaining Alzheimer’s Disease to children and teenagers. 

ALERT-  What if you find that there are few, if any, support services for the problems of the younger AD spouse and their children???????  THEN IT’S UP TO YOU TO MAKE A LOT OF NOISE – LET THE ALZHEIMER ASSOCIATION AND THEIR SOCIAL WORKERS KNOW THAT THIS IS A GROWING PROBLEM, AND THEY NEED TO ADDRESS IT!

Three years ago, I worked with a school psychologist, who was also a lawyer, and Special Education Administrator. (Talented guy). He was in his late forties or early fifties. At the end of the school year, he found out that his 42 year-old wife had Alzheimer’s Disease. They had two teenage daughters at home. I am going to contact him for advice on handling the EOAD of a spouse, while raising teenagers. I will pass on any relevant information he can share with us.

Although I certainly understand the pain and stress of living with an AD spouse, I would never presume to fully comprehend the added anxiety of trying to bring up children in the midst this situation. It is my hope that I have, at the very least, provided some helpful information to you.

TECHNOLOGY UPDATE: Whoops- I haven't quite gotten the hang of making the links myself, so the previous two days' Blogs are below. My son and I will have time on Friday to run through the process together, and then I should be able to do it on my own.

Feedback to joan@thealzheimerspouse.com