I ask myself why do I care whether or not our children the children of parents with Alzheimer's Disease have some type of support network. I care because for Adults there are all kinds of conferences, support groups, meetings, educational seminars for us but nothing for our kids. How are they suppose to learn except for the fears of the disease that they learn at home if there is no outside educational resource? How are they suppose to learn to cope with what is happening to their mother or father? It is just so, so disappointing to know that a great organization as this cannot provide that. I guess if we can look away and say that this disease only affects older people then that would not be an issue and it really appears that this is the case.

I am sorry if anyone here feels that I am speaking out of place but darn it when you have alzheimers as a parent of a child to know that NO ONE out there that could make a difference won;t it is really disappointing.

Alz.org right now has the "Just For Kids and Teens" section, but it is so basic. It talks of the brain changes, and has a section "whats happening to Grandpa?"

Well, while seeing a Grandparent go through this is sad in itself, most kids have the support, understanding, and guidance of their parents to help them get through their emotions. The parents are still in "full parental mode," while the Grandparents has AD.

What NONE of this stuff addresses is the Psycho-Social impact upon young children of an AD parent. Where does their support, understanding, and guidance come from? From an already overwhelmed non AD parent?

Hey, that AD parent and NON AD parent are desperately in need of the help that a Camp can give kids....... think of it that way............. Would that make the difference? That the kids camp is a desperate necessity for the AD affected parents?

The well parent cannot do it all........caregiver to their spouse, assuming dual parent roles, needing their children to experience social interaction with counselors and with other kids who can "HONESTLY" tell our kids that they know exactly how they feel.

Think about the much bigger picture. Yeah, you up there at the top of the page, the ones that go by Alzheimer's Association.

Diana, today has been one of my really worn out and somewaht foggy days. I am not quite sure I understood your post?

Hi,

What I was expressing is that the Alzheimer association really needs to consider the whole picture. We parents, whether the AD parent or Non AD/Caregiver parent need the support of the association for our children. We want our children to be considered in all this. By knowing our kids have an outlet, and resource, and others who relate to them, that becomes a great benefit to the parents as well.
I guess my question to them is, "Why don't they consider the need for the Kids Camp as a necessity even for the AD patient and spouse?" And would that make a difference in how much importance they give to considering this camp?

quote:

Originally posted by New Realm:
Hi,

What I was expressing is that the Alzheimer association really needs to consider the whole picture. We parents, whether the AD parent or Non AD/Caregiver parent need the support of the association for our children. We want our children to be considered in all this. By knowing our kids have an outlet, and resource, and others who relate to them, that becomes a great benefit to the parents as well.
I guess my question to them is, "Why don't they consider the need for the Kids Camp as a necessity even for the AD patient and spouse?" And would that make a difference in how much importance they give to considering this camp?

If I send you the contact addresses would you be willing to write them a letter inregards to this?

Absolutely, YES! I'd be glad to.

Diana, please check your private e-mail and thanks so much!!!!

Last month at our local Alzheimer's support group meeting, they had a special night just for the kids. The ages ranged from 5 to 14. It was a good night. My kids told me they really enjoyed it. The turn out was so good that the leader said she would do it have it again soon. They got to do activities that involved memory and using their "thinking" skills and how people with AD are affected by the disease. I wish they had a support group especially for them though.

I am so glad to see that at least AD with young children is being addressed. My husband is 68 with AD and we have an 11 year old. It is extremely difficult for her, and I want to be able to give her all the support that she needs but I don't know where to start.

Hi Kirby,

Welcome. My husband is 71, and we just got home from our daughters graduation. She's 17, and our son is 16. Their Dad was diagnosed at 68 with AD, when the kids were 13 and 15. He coulda/shoulda been diagnosed a few years earlier, but he was in big denial, as was I to some degree. Yes, our kids were barely 9 and 10 when the noticable signs came about. It truly has been hard on them. These kids need tons of support, and Tracy has been a stalwart advocate for the children affected by this horrible disease.

At the Alz.org main page where you signed up for this forum did you check out the section on just for kids? I recently received a brochure about talking with and supporting kids (teens in our case) who must deal with AD due to a Grandparent or parent having the disease.

Hi Kirby, I am sorry about your husband. My son was only 7 when I was diagnosed, he is 13 now and has adapted to the changes as they come. But he is now coming to stages of anger because i forget so much. I no longer make promises because that way I can't break them. There is information on the website www.alz.org for kids, that might be a start. If we could get a group of kids here to start e-mailing each other that might many of them. We have actually done that but it only lasts for a couple of months and they quickly drift apart. If she was 12 years old or will be soon, I still have 1 spot left open for the kids camp with scholarship. Here is the website if you are interested:

Camp Building Bridges www.freewebs.com/younghope2007/

Kirby, welcome.

New Realm started a thread for you on the Caregiver Forum. Far more people read that forum on a daily basis, so you may get additional support there.

In addition to "talking" with all the great people on this Alz Assoc web site, I would suggest that you also visit The Alzheimer Spouse web site:

http://www.thealzheimerspouse.com

It is for those of us whose spouses have AD, and you will find others there who have young children, too, who can help you with the special problems you face.

I am so grateful for everyone's concern. Sometimes ya get to feeling alone. I think that just knowing that other kids are dealing with the same thing our daughter is, helps her. I showed her the email. I too, think that my husband has had this longer than we think-he is a physician and was in total denial. Do your spouses have mood swings frequently? I think that that is one of the harder things for her to understand. Dad can be okay one minute and not the next, especially in the evening. I appreciate just knowing that you are all out there.
Peace