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Wendy12345678 posted:
Hi, my name is Wendy, and my mother has early onset alzheimers. She started with symptoms in her later 30's. My grandfather also died of the disease, as did my great grandmother. All on the same time, an all early. It is suspected that my mother will perish soon, and she is now being put into a home due to bathroom issues. She is 56. She does not know who I am, and only remembers her mom, sister, and boyfriend. I have 3 young boys and have many things on my mind. First I am an only child and am unsure if I should take the trip to Texas from AZ with my kids (which we can't afford) to visit my mother before she passes despite he not remembering me. Advice? Also there is me. This is genetic, and has yet to skip a generation in the 3 previouse to me at the least. I can not afford to take the genetic test, and not sure if I want too, considering I am 32, and not sure I want to know I am towards the end of my cognitive life. Many my of decsions in life seem to mirror those of elderly people in some ways, as I do not want to start things I will leave unfished for my family to pick up, and do not feel the need to make big life changes because there is not enough time. Living like this is not ideal. I'm not sure what to do with myself, and would love some advice.
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cjh1203 responded:
Hi, Wendy.

Your story is so sad. My heart breaks for you and your family. Alzheimer's is awful at any age, but even worse when it hits someone so young.

I don't think it's necessary to take your sons to visit your mother if she doesn't even know who they are. It would be stressful and expensive for you, wouldn't mean anything to her, and would probably be upsetting for your boys.

The important thing is probably to try to figure out if it would make you feel better to visit her yourself, even if she doesn't know you. If she were to die without your seeing her, would you regret it? There's no right answer; it all depends on what would make you able to deal with her death when the time comes.

What a terrible thing to live your life with the threat of early-onset Alzheimer's hanging over your head, and not being able to fully enjoy your youth because of it. In your situation, I don't think I'd want to know, but you never really know how you'd react until you're in the situation yourself.

The first thing I thought when I read your post is that you really need to get some counseling to help you come to terms with all of this, and especially with your uncertainty about your own future.

Do you have health insurance that would pay for counseling? If not, you might talk to someone at your local Alzheimer's Association and see if they can recommend a counselor who would only charge based on your ability to pay.

If we can help you here, we certainly will, but I hope you will consider counseling. This is something that would be difficult for anyone to handle alone, and you need to find a way to enjoy your life without the constant dread hanging over you.

My heart goes out to you.

Carol
 
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Judith L London, PhD responded:
Hi Wendy,

What a rough situation.

Just because your Mom doesn't seem to remember your name doesn't mean that she does not know you. When she sees you, she will know that you are a very special person who cares enough to visit her. It sounds like you could bring along pictures of the kids and that would be fine. My book Connecting the Dots.. contains many stories about how people with Alzheimer's still have may thoughts left, but they are in fragments.

It's scary to think that maybe there is a hereditary component. I suggest that you live your life to the fullest, get exercise, eat properly, get enough sleep, learn to meditate and relax. Those family members who join a support group sponsored by an organization like the Alzheimer's Assn, fare much better than those who don't.

Whether or not you decide to go for testing, the best way to delay the onset of this disease is by following some of the suggestions above that are supported by research.

Try not to panic. Every day there are new discoveries about Alzheimer's, and the longer one can delay the onset, the greater the chance that new treatments will help.

Keep up your great efforts to be a good Mom, and do what's best for you.

Hope you get some relief,
Judy
 
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2010guardian responded:
Hi Wendy,
My husband who is in moderate stage has trouble remembering friends names. He calls Carolyn, Betty. I spoke to her about it and she said she didn't care what he called her, he knows her face and he knows who she is.

I'm wondering if that is the way it is with your mother. Since you live in a different state, maybe it would help to make an album of you as a kid and then growing up and to the final stage as you are now. She will relate to your younger pictures. Have you changed in your looks, maybe gained weight, colored your hair, etc. Let her see the Wendy that she knows and then put the picture of yourself at the end of the album. Let us know if you try this and how it works.

Kathy


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