Hi Everyone,
I am new to the forum and didn't see this topic, but I am looking for advice on how to introduce my children to the disease. My mother, who just turned 60 is quickly approaching middle stage and I need to address it with my kids. She just spent a week with us, after several months of little communication with my kids and i know they detected a huge difference.

My children are 12 and 10 and have always had a close relationship with my mom. Last year, she moved out of the area, so their interaction is interminttant is enough that I know they notice the difference.

What is my best move? Do I show them the HBO "Grandpa" segment? Do I try to downplay it by just saying "Nana's memory isn't good anymore?"

I am scared to change their relationship with her, but feel like something needs to be explained so they don't think the worst and aren't confused and think I am keeping anything from them. thank you so much for any advice...I am new to this and am having a horrible time with it.

Best,
K

Hi K, thanks for joining the community - but I'm so sorry for your reason why.

I'm betting that you know your kids better than anybody else does, right? So, take a few minutes right now, and just set it up in your imagination. Would you talk to them together or separately? What time of day? Before they're going somewhere, or after they get back for the night?

I think downplaying it, as you suggested, is pretty smart. There's no benefit that I can see in scaring them with details about the future with grandma. Tell the truth, and nothing but the truth, but I wouldn't tell the whole truth.

You said that you know they notice the difference in your mom. That might be a good place to start, asking them what they've noticed. I'll bet you right here and now, if you ask them what they think is going on, at least one of them will have already considered Alzheimer's.

Lastly but most important, your kids will probably handle this just as well as you do. They'll look to you, see how you're handling it. If they look at you and see you're understandably hurting over your mom, but also demonstrating that you'll still love and care for them, even while your mom is sick, they'll be alright.

This is really interesting, and I look forward to other's feedback to you, and your thoughts on that.

Hi K.,
Welcome to our board.I'm sorry for what brings you here, but glad you found us. The various caregiver support groups may have more help.

I'd suggest Maria Shriver's, What's Happening to Grandpa". You met Maria on the children's segment of the HBO series. Her dad has Alzheimer's. Read the book before you read it to your kids. What are similarities and differences? Discuss these with your kids as you read.

Tell your kids exactly what the diagnosis is. Answer their questions and encourage them to keep asking as more questions come up. Kids need the truth!

Again, you might want to recheck the HBO kids section to see if the timing is right to show it. Do pause and talk as needed. Some aspects, especially the negative behavior will be hard to think about as it relates to their grandmother. Tell them everyone does not act that way, but that it is common. And to always remember, it's the disease, not their grandmother.

Remember in one of the segments that one of the children made her grandmother a memory book. Possibly a ring leaf binder would work. Not too large. When you need, make another book. Also, only one or two pictures on a page. Soon, if not already, more will confuse her. Label, so others can know who the people are.

Books: Does she like to read, but doesn't read now. Some of the books the children are reading may be just at her level. Let them read to her. Adjust the reading level to easier books as needed.

What kinds of music does she like?

And most important of all, in my opinion. Are you a touching family? If not, try it. Your mom will be so confused. Hugs, holding hand, etc. can often have a soothing quality. So if you aren't a family to show affection by touch, can you begin now? Then as the disease progresses, you can show her your love with your hugs and hand holding.

Please allow your children to be a partner with you as you head down the hard road ahead.

The kids need to know everything.They are old enought to have an understanding of whats going on......Do it ASAP!!

Dear K,
May I add my welcome to the others?

I think you received some good tips. As Alan said, YOU know your children better than anyone. They will follow your lead. As Alan, Mimi, and Snowy. said, tell them the truth but not the whole truth unless THEY really want to know.

Good Luck. Please, come back and let us know what happens.

My thoughts and prayers are with you all.

Camp Building Bridges is still taking registrations for kids. We do have scholarships available. It is a wonderful program in helping the kids to understand the disease. This year one of the topics is "Understanding Alzheimer's & Frontal Temporal Dementia and the stages" another topic is, "Dealing With Their Emotions." PLease go to the website for more information: http://www.freewebs.com/campbu...gbridges08/index.htm
Though it does say for ages 13-17, we do have a couple of 12 year olds registered. I think this might just be the thing for your 12 year old daughter. She will meet others that share her same situation and they can exchange e-mails and stay in contact for furhter support. Then the rest of the week is LOTS of fun that includes swimming, fishing, boating, hiking, archery, campfires and more!

Tracy

Please, everyone, go to this site. Don't be misled by the title. Yes, there's a lot of information that can be used by and for teens, but there is much more.

http://parentswish.com/SingleMom/index.html. I found this as a link. Warning, have tissues handy. And I forwarded it to my kids.

And another idea: what are our local chapters doing to help kids, not just those who are caretakers, but all kids who are experiencing Alzheimer's up close.

Have lots of tissues handy!

Thanks, Mimi.

khampton
I think that it is very important to open discussions about your mothers changes. Obviously there is no way to know exactly how AD is going to effect your mom, but with an open discussion, the subject can be approached as the illness progresses.
It is important that they get the correct information. Contact your local Alzheimer's Assn and encourage them to attend a class with you.
Also, if your kids had something happening in their life that was troubling, wouldn't you want them to be able to come to you? If you show them that difficult situations arise in life, but that the door is always open, they will be more open to let you in.

And to all, what is your reaction?
I am coming to believe that the more physical attention, the AD patient receives, the calmer the person is.
I'm thinking of two cases from the HBO film.
The first is the gentleman in the nursing home who cuddles with another patient and is constantly singing and whistling. Family and caregivers seem so accepting.

The second is the mother on the farm with the huge fenced in yard. The daughter is so patient and gentle.

And yet, I wouldn't want to conduct a study where people are treated harshly to see if there were more agitation and fights in such an environment. But yet, I wonder if the caregivers can control their exasperation and annoyance, would fewer psychotic controlling meds be necessary?

I'd like some opinions.

quote:

Originally posted by Mimi S.:
And to all, what is your reaction?
I am coming to believe that the more physical attention, the AD patient receives, the calmer the person is...

Maybe you start another thread...this one is about how to tell children, which is also a good subject.

quote:

And yet, I wouldn't want to conduct a study where people are treated harshly to see if there were more agitation and fights in such an environment. But yet, I wonder if the caregivers can control their exasperation and annoyance, would fewer psychotic controlling meds be necessary?

That is one excellent question! You've really got me to thinking about when I'm in a bad place. I strongly suspect that you're right, up to a point. A kind word instead of a defensive or argumentative response? I think that would be nice. Though, it seems like there are times when I'm going to take whatever I'm given and argue over it.

But overall, yeah, a kind word will usually stop my escalation.

Hi Anita,
Your comment is on target. However, I forgot to write my introductory comment above.

Hopefully, children are visitors and not full time care givers. As such, they are often in a position to give the loving companionship, hand holding, hugging that a harried, over worked caregiver knows is needed, but there's the bed to get stripped again, another load of laundry to soak and try to get the stains out and a touch of impatience might seep out. I hope the kids can step in with understanding to soothe and calm the troubled grandmother, great uncle, whatever.

Hi Everyone,
Thank you so much for your kind words and great advice. I must admit - I chickened out over the weekend with the excuse of not wanting to ruin Father's Day...buut realize there is always something to ruin. I am planning on having the conversation tonight, implementing the advice I have recieved here. I will let you all know how it goes.

My heart is breaking, I know they need to know but am so afraid of forever ruining thier concept/relationship with their Nana...how awful.

Thanks again, I will keep you posted and am happy to have found these forums and will be posting on the caregiver forums also.
K

You are doing them a service by telling them,believe me.....

Hello!
First off, I'm very sorry about your mother. I'm 15, and both of my grandmothers have/had this disease. I was 10 when my Nana was diagnosed, my mom decided to tell us exactly what was going on, but make it easier for us to understand. Like, instead of talking about the plaque in the brain my mom said that "A brain is kind of like cheese, and rats will go in there and eat some of the cheese and make it hard to remember things." I found that to be comforting in a way because I knew it wasn't her fault. Hope this helps.

Thanks for your input, Claire. Your mom did an excellent job. Have you read, What's happening to Grandpa by Maria Shriver? What's your reaction? It's written for younger kids.
I'd also recommend watching the HBO segment written especially for children. Needs adult input. Go the ALZ or HBO site and look for links. As I've said before, kids, if they understand what's going on, can be a source of so much TLC for their Grandparent!

Thank you for your response Claire. I'm sorry to have not posted back - its been a crazy few weeks. We moved my mom to a place closer to my sister, with much more space which she seems to like. We have also hired an assistant for her to help during the day.

I did have the discussion with my kids, and they were absolutely wonderful about it. Over the 4th weekend, when we moved they were very helpful and took full advantage of having fun with her.

Interesting development, she somehow found this forum and was upset that I told my kids she has Alzheimers, because she doesn't believe she has it. She asked me what major changes my kids have seen and I likend it to how when she doesn't see them for awhile, you notice how much they have grown...they hadn't seen her in awhile and were noticing she was more forgetful.

It makes me nervous to post here now, I don't want her to be uncomfortable with what I put up here...but find this comforting.

In any case, thanks again to all of you and all of your support and sharing of experiences.

Change your name! Post on the care givers site. Maybe she won't find you there.

And, too bad you weren't quick enough to respond: you were on the "I've got Alzheimer Board?" But I know I wouldn't have been that fast.

Kids are great when they understand what's going on.

And if she denies some more, you can quote a person who has been diagnosed almost three years. (That's me.) She can bury her head in the sand, and the disease will keep marching on. Or, she can asknowledge it, get on to the regime and thus, possibly, put up a big hand to slow it's progress. Her choice.

Hey K,
I just turned 18. I have been dealing with my grandmother's disease for about 5 years now. She is very far along in her progression. For me it was not that hard to understand the disease, it was just hard to see my grandmother go before my eyes. I was always close with her so it was easy for me to notice the differences. The best advice I can offer is to just listen to your kids and their concerns. Try not to let them close you off. When I share my concerns with my mom, it helps both of us. If you need any advice or have any questions please contact me. My email is shortstuff0202@ameritech.net
Your family is in my prayers.
-Jayme

Hi all,
Did you know that you can click on a writer's name and their previous posts will show up.

Well I did and i just had to copy it.
Posted March 26, 2009 11:30 PM
"Lost"

She is screaming out for help but no one can hear her. Everyone keeps ignoring her cries. She knows what she wants to say and knows how to form words, but she can’t seem to put them together. Can no one see that she is in pain? The louder she yells the more they look at her with disgust. What did I do so wrong that everyone hates me? Her husband has to care for her like she is a child. She tries to tell him that she knows how to get dressed and brush her tooth. The last time she tried on her own, she messed up. It was only once…or was it twice? Why can’t he let her try again? It isn’t fair. She knows she can do things by herself but something is stopping her. She cries out in pain but all they see is a blank face. They all seem to hate her. Who are they anyway? She knows them from somewhere. That’s her husband, but who’s that lady next to him? She looks like someone she has met before. She asks her husband who the lady is and he tells her it’s her daughter. What? She knows what her daughter looks like and that is definitely not her. The woman burst into tears and quickly walked out of the room. She was confused. Did she say something wrong? Her husband’s eyes filled with tears as he turned to leave. She said she was sorry, but he kept walking. “Don?” He stopped and turned to face her again. He smiled. She smiled. He asked her to say his name once more. She had just said it and knew what it was, why did she have to say it again? His smile slowly faded. She looked down as she struggled to remember. What was his name? She knows him from somewhere. Oh well, she probably won’t see him again anyway.
The door to her room cracked open and a young girl stepped in. Softly she said, “Hi Grandma.” Who was she talking to? She doesn’t have any grandchildren. Her daughter is only seventeen. She tried to tell the girl that she must be lost, but the girl just smiled. She knew that smile. Someone very close to her smiled like that. The girl walked over to the bookshelf and pulled out two coloring books. She took one for herself and gave the other. A coloring book? She wasn’t a child and the girl was too old to enjoy coloring. Was she missing something? She looked down at her book and back at the girl. Oh well, it wouldn’t hurt to play along. She started coloring and immediately realized that she loved it. She finished the drawing so quick and couldn’t believe how great it was. A man stepped into the room. He looked sort of familiar, but she couldn’t put his face with a name. “Jayme,” he said to the young girl, “Your mom is waiting for you. Say goodbye to Grandma. You will see her again tomorrow.” The girl placed the coloring book on the bed and slowly walked toward her. “Goodbye Grandma,” the girl whispered in her ear. She turned towards the door, all the while never making eye contact. Something was wrong. “Little girl, is something wrong?” The girl stopped and turned to face her. Her face seemed tired. A girl of her age should be full of life, not somber. A tear appeared in the corner of her eye. “What’s wrong little girl?” She shook her head; but before they could talk further, the man put his hands on her shoulders. “Let’s go,” he whispered while gently guiding her away. “Don?” The man stopped in his tracks. “What’s wrong with that girl?” He looked down at the child’s face, which was now trembling. He wrapped his arms around her. “She just misses you, that’s all.”

Jayme H. I wish I could guide you on where to get this published.

Your writing reminds me of
'Still Alice' by Lisa Genova. Good reading. Just have the tissues at the ready.

Mimi S.,
Thank you very much. I wrote that one summer while I was struggling with my Grandma. I'm going to read the book you recommended, sounds very good.
-Jayme

Jayme, I hope you are still writing. How is your grandma doing?

It is actually very simple how to explain to a child that a lo has dementia. We used a couple on my son when he was younger and one of them was that a person;s brain is much like a computer and sometimes the files that we hold in our brain get mixed up or lock up just as they do on a real computer and sometimes your lo just needs a little down time such as a nap or a rest period to kinda reboot themselves. Make sense?

Tracy

Hi younghope,
Your analagy is great as a beginning. How do you explain the negative behavior that is so common as the disease progresses other than this is what the disease does. More and more, I am coming to believe that a lot of TLC and calmness of mannner may lessen that behavior. Some meds may help. I'm not aware that we even know why. We know it's more commmon in Alzheimer's than what I call simple dementia. And it is certainly one of the more frustrating aspects of the disease to deal with.

Mimi,
I am writing off and on. I don't see my grandma as much as I used to anymore. Last time I saw her was a couple weeks ago. I think she is about stage 6...so slowly turning downhill for the worst. Right now I just live for the moments where she snaps out of it and is my grandma again. I just wish I wouldn't have been so young when she started all this, I would have had more time with the real her.
-Jayme

Hi Jayme,
You will have some good memories of your grandma. You will also be consoled that you were able to help in her care. Treasure those rare moments when she may recognize you.
However, what no one knows is what she is aware of. So be careful of what you say near her.

Sing to her, read to her and talk to her. Will she let you hold her hand? If she is bed ridden, any chance you can cuddle with her?

I've no proof that any of the above works; but my gut instinct and everything I've read, the HBO programs tell me that LOVE, GENTLENESS AND KINDNESS are the way to go.

Do write some more about what goes through your mind, and what you think might be going through your grandma's mind as her time winds down.

I am brand new here and am impressed with all of your open & kind hearts!
From the 10 signs of alzheimers, my husband exhibits all but 1. He wont hear of dementia at all. He works full time, a very intelligent & loving man. I thought maybe it was the medication he is taking, but it is getting worse. Any clues on getting him headed in the right direction? What do I do?, Where do we go without going from Dr. to Dr. to Dr.? We do have a family Dr. My husband is 67. Thank you so very much! My prayers to all of you!

Hi jeh,
Well I suppose he has two choices. Bury his head in the sand and do nothing. By the time it's obvious to all the medications will have lettle effect.

Or you/he can check the local phone book, or contact the local Alzheimer's Assoc. for a memory clinic or other testing site. one needs the full work up, because there are several other, some, easily, remediable causes of dementia.

The earlier the diagnosis is made, and the harder one works at the regime, the better the chances of really slowing it down.

And yes, people who are very intelligent are great at covering up. But, covered up or not, it's there.

So, yes, testing is scary. But as a person with Early Stage Alzheimer's, knowing I have it is, in a sense reassuring. I know I have it; it explains a lot; and I'm putting up a terriffic fight!

Thank you Ms Mimi! I'll ck for the testing clinics!
jeani

I just came across this, a terriffic list of books on
AD for kids.

http://www.agingcare.com/News/...-Deal-With-Alzheimer

My father in law has lived with us for 2 years now. I have 2 daughters 13 and 17. When he came to live with us we did not know he had Alzheimer's and so we were just honest with the girls. We said GP seemed slower at things but really loves them. So we took the be honest and point out the differences and the constants.
He has lived with us now for 2 years and we continue to be honest with the girls explaining what is going on in his brain and how it 'looks' to us and how it feels to him. It is painful... but it is the truth and I think it is the best way to be. I hear them tell their friends about their GP and they accept him as he is. Even protect him a little. It is strange when we begin to care for our parents... even stranger when our children care for their GParents.
We are happy being together during this long good-bye and I can only hope that it is a life lesson that will benefit my kids somehow.
Good luck
Cathie
cfolanj@aol.com

Cathie, I think your efforts are marvelous, and I hope you'll consider gathering your thoughts into book form. There are a lot of families dealing with their Alzheimer's loved ones, and your approach is worth sharing with the world.

Cathie,
Alan has a tremendous idea.
Your children and their friends are also old enough to put down thoughts from their perspective. As you are gathering your ideas, please consider looking for the best site on these Boards to post.
An additional benefit. You can look back and see where Gandpa was last month, last year.
Are there times when Granpa is more coherent? Please share those moments and your feelings.

I had thought about it since i have read a few books that were helpful to me about the initial phase... the what to do with the person phase.
Now that we are into the process I have thought it would have been great to read about how you can do it.... and things to consider along the way. I actually do not know anyone in my area who is a caregiver... although I am sure they are out there. So, it is simply nice to talk to someone about it

I wanted to 'know' also and asked for the testing... PET Scan or cat scan show shading patterns that are used for diagnostics. Make sure before you get a diagnosis that you have good insurance coverage because you will not get any after the diagnosis...
Unfortunately we did not know to do this.
My father-in-law is who i care for and he denied any problems also... even though he could not do many simple tasks.
Good luck.

I would suggest buying a copy of "The 36-Hour Day" by Nancy Mace and peter Rabins.
Your local library most likely has or can get it for you, but mine is so marked up that I'm gladf I have my own.

Also, listen and relisten to the HBO tapes on Alzheimer's. if you go to the web site there are others, in addition to the ones that were on TV. Fr5om my experience, i'd say only do one research per day. There is a lot to absorb:but also so much hope for those of us in Early Stage.

Check you phone book or go to Alz. Assoc. web site and find the location of your nearest office. They can tell you of support groups and other things going on in your area.

Your warnings about no insurance after diagnosis do not apply to those of us on Medicare. I have not paid one penny for diagnosis or two year follow up testing.

I'm sorry but I'm new to this forum and hope this is the correct way to respond. I would like some information regarding the use of Namenda, Aricept, Lamictal and Abilify. Is this standard treatment for dementia and epilepsy. I'm a little confused and would appreciate some help.

Hi Fdean,
Namendas and Aricept are used for dementia. I am not familar with the other two. Nor do I know anything about meds for epilepsy. You can 'google' each name for muuch more information.

Fdean, Lamictal I've heard about being used for 2 things: Seizure disorders, and to stabilize mood.

Abilify is a major tranquilizer, a.k.a. anti-psychotic. With us AD guys, it's most commonly used to curb aggression. Seroquel seems to be used most often, as in my case, so I can't comment on how it feels to the patient.

I get the impression that your loved one's MD is trying to help a person who's mood has been affected by dementia. Am I close?

"The 36-Hour Day" This is a fabulous book.
You said:
Your warnings about no insurance after diagnosis do not apply to those of us on Medicare. I have not paid one penny for diagnosis or two year follow up testing.[/QUOTE]

I am wondering if I have missed something because my father in law is billed the 20% medicare does not cover? That is why I was looking for supplemental insurance for him and then found that they would not include anything related to his Alzheimer's.

No, you haven't missed anything. This Early Stager completely forgot that she does have supplemental insurance. My apologies.

Dear Cathie, Welcome to these message boards. There is much wisdom and support from the members here.

If you post on the Caregivers' board, you will find many experienced caregivers who can advise you. The chat room is available and usually attended in the evenings in all time zones.

I would also suggest that you call the 24 hour Alzheimer's Association Helpline at 1-800-272-3900 and ask to speak to a Care Consultant for advice regarding your specific situation. There are many resources that they can point you to.

Also, check your local city or county Agency for the Aging and the Veteran's Administration if your FIL is a veteran.

Iris L.