This is intended to Cheri B and Iris L, but of course a response from anyone is welcome. Cheri B and Iris L, I may be making logic leaps here, but I'm guessing you're young women, who, like my wife (age 50) has been diagnosed with EOAD. I have no guesses about whether there's a significant other in your life, but if there were, what would you have him do? My wife is solidly in Stage 5, and I feel way over my head. What can I do to make her comfortable/happy/content? Keep in mind I have 3 kids to take care of as well.

Dear Red Sox, I'll try to answer your question by telling you a little story. When my Mother was dying of cancer 17 years ago, all she thought about was me. I was sick with no diagnosis yet. "What will become of you?" I did my best to reassure her.

I think your wife won't be thinking of herself, but of her children and her husband. She will be prepared to sacrifice herself for her family. I think she would want to spend as much time as possible with her family for as long as she can. At the same time she would want the children's lives to be as normal as possible.

Red Sox, I can't imagine what you are facing. But you are not alone. There are other couples and parents of young children on these boards. In fact, I'm sure there are many who can encourage you, even without their own children at home.

Did you know that there is a website for spouses of Alzheimer's patients? Look for www.thealzheimerspouse.com.

Tracy Mobley who posts as Younghope1 has a son still at home. She is very involved with the children of Early Onset patients.

Keep posting and asking questions. There are many here who can help you.

Iris L.

RedSox2004,

I wish I could put you in touch with my husband. He is very supportive, but is still learning. He has made me feel very comfortable with any decision I make and is never embarrassed when we go somewhere and I have an Alzheimer's moment (which can be anything from doing something embarrassing to panicing because there are to many people or to much noise). We don't have any children at home so I don't know what I would do in that case. I do have a grown son and a grandson that I worry about, but that is different than having children still at home. How old are your children?

Thanks to both of you for the kind words. We have three sons - 17, 13 and 8 - and I couldn't be more proud of them for how they're holding up through this. At this point, they have very little interaction with Mom, who pretty much stays holed up in the bedroom most of the day. I suppose she might feel embarassed to present herself to them. But you're right, Iris L, I'm sure she still cares deeply about them, and maybe I'll make an effort to get everyone together more often.

RedSox2004,

I hear you, and while I'm certainly not happy that you are in the circumstance you are in, it is comforting to hear that I'm not the only one. In our area, I have yet to find someone with young children having to deal with issues of a parent having Alzheimer's disease. My husband is 54, and we have an 11 yr old daughter, a 5 yr old son, and a 3 yr old daughter.

I, too, am tremendously proud of my oldest daughter and how she is coping with what life has dealt her. My two youngest are really too young to understand the disease and the diagnosis/prognosis, so for now, we just live life as normally as we can.

I'm just not sure what normal is.

Red Sox...
as harsh as it may sound I say this with much love and sympathy, Let us Die with dignity.
There will come a time when we are no longer the person you knew, and we won't know you either.
At that point we are basicly gone a shell of a body remains but the person is no longer there.
at that point it will require much courage on your part to allow us to go.
At that point it will be time to begin to move on with your lives as difficult as it will be .
Rest assured that God has them and will take care of them til you arrive.
God grant us the will to change that which can be changed,and the courage to accept that which can't.

I sometimes feel compelled, typically by a big flow of god talk, to point out that we don't all have to see it that way.

There have been thousands of distinct religions over the course of history. When you understand why you don't believe in any of them but one, you'll understand why I agree with you about those thousands of religions . . . and I take only one more step, and put your religion in with the rest.

Those are sweet words, Sven.

Iris L.

Hi, I am a wife of a wonderful man that needs a little extra care now and then. What alarms me about your wife is shutting herself in her room. She has many good times ahead of her, but times a wastin. Can you get her some antidepressents so she can enjoy those boys. They need her and she needs them. We have grandchildren the age of your kids, and my husband interacts with them all the time. Get her out of the room. Give her lots of TLC.

quote:

Originally posted by quarterlady:
They need her and she needs them. We have grandchildren the age of your kids, and my husband interacts with them all the time. Get her out of the room. Give her lots of TLC.

Thanks Quarter. In fact, we just started her on Lexapro, and things are improving a bit from that perspective - she's spending more time with us, and seems to enjoy it, and the boys seem reassured about her health.

give her encouragement. take her with you. engage her in conversation, even if you do not understand. try to read her emotions...body language helps. recognize and validate them. compliment her on how well she is doing. she beams when i introduce her and say how well she is doing, giving her a little squeeze. she loves interaction with everyone and the acceptance she receives from my friends. i would have it no other way.

My husband (52) has been taking memory meds but I really think the zoloft was the best thing to help him feel more like himself. Exercise has helped too. We have tried hiking and yoga. Sad and glad to know another member of Red Sox Nation is dealing with this. Is there anyone with New England info on ways to help a teenager deal with this? Senior year in HS is hard enough...

Welcome to these message boards, DSJ. There are many people here who will advise and support you and your husband. Feel free to use the entire website, including the Caregiver Forum and the chat room in the evening.

We would like to know more about you. You can begin your own thread by clicking on the purple "Start a new discussion" button at the top left.

If your husband can use the computer he is welcome to join us also.

Iris L.

DSJ. I agree with you wholeheartedly. Sad that you're in this predicament, but glad that you've found the message boards here.

You will find such support here.

I am caregiver for my hubby, who is 54 and has EOAD. We have 3 kids, ages 11, 5, and 3, and yes, it's hard enough on the kids growing up, but to have to deal with a terminal disease and all the personality changes on top of that.

It is incredibly difficult to find support groups for EOAD, let alone something for the kids. I do know that Tracy Mobley, who posts as YoungHope1, started a camp for teens called Camp Building Bridges. But beyond that, I would suggest starting with your local Alz chapter and seeing if there is anything in your area.

There is nothing where I am, so I come here for support, and do the best I can to keep my kids happy, healthy, and well adjusted with some sense of normalcy in a very not-normal situation.

I wish you the best of luck in finding something, and let us know if you do! Come back often, and come to chat room if you can!

Your wife sounds very depressed is she on anything for it?
I have Vascular Dementia after living with a dx of Alzheimers for 8 yrs.......I keep my mind busy on the computer,play mind games am in an onlimne bowling league,go to the senior center for lunch every day.My hubby just hauls me wherever I want/need to go,lol..........He's my best bud after the computer..........