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Breaking the news to school age children
TimVin
Posted: Thursday, May 26, 2016 8:01 AM
Joined: 5/26/2016
Posts: 13


Hello.  I'm 45 and the father of three great boys.  After a recent PET scan and a frustrating few years of chasing down symptoms I got the final word of a Dementia diagnosis (FTD specifically) yesterday.  

My boys are 12, 14 and 16.   My wife and I are not sure how to break the news to them and any advice would be greatly appreciated.  


Agent 99
Posted: Thursday, May 26, 2016 8:50 AM
Joined: 6/7/2013
Posts: 2166


Welcome Timvin.  You have found a great e-village of caring and compassionate e-friends who are here to support you and your family through this journey.  My sweetie had grown children so I have not had a similar experience.  Many caregivers have spoken about Maria Shriver's book "What's happening to Grandpa" when communicating with children as helpful.  I would also like to recommend that you post on the Spouse Forum as there are too many parents with young children with a parent who has been diagnosed with younger/early onset.  I am sure they will share their challenges and successes with you.  If you want, I can copy your post to the forum.  Just let me know.  

http://www.amazon.com/Whats-Happening-Grandpa-Maria-Shriver/dp/0316001015


Michael Ellenbogen
Posted: Thursday, May 26, 2016 8:54 AM
Joined: 11/30/2011
Posts: 4384


 I am so sorry to hear of your diagnoses.  I would tell the truth and give them the facts in simple terms.  I know many will disagree. There is a book out there but I don’t remember the name of it that was geared to children as a story about someone who had dementia.

 


TimVin
Posted: Thursday, May 26, 2016 9:07 AM
Joined: 5/26/2016
Posts: 13


Thank you.
Mimi S.
Posted: Thursday, May 26, 2016 9:48 AM
Joined: 11/29/2011
Posts: 7027


At your library or on line look for The Alzheimer's Project. There is one CD for. children. Preview first. The Maria Shriver book, What's Happening to Grandpa may be OK for the younger. 

What is imports is that you tell them. Tell how it's impacting you now and that whatever happens, you love them.  Do keep the lines of communication open.


TimVin
Posted: Thursday, May 26, 2016 9:54 AM
Joined: 5/26/2016
Posts: 13


Thank you very much.  Am definitely hoping to hear from folks who have had to have the conversation with their young kids.  I've been the dad that can do it all in their eyes.  I'm planning on doing great and hoping to live beyond expectations but that still puts my exit before most people even retire.  I know it's hard news to get whether it's your grandparent or parent.  but when you're so young I'm sure it's a pretty massive thing to digest for kids in the teens and younger.  I know they know something is up and that I can't keep them in the dark for much longer.
alz+
Posted: Thursday, May 26, 2016 10:13 AM
Joined: 9/12/2013
Posts: 3608


Maria Shriver thinks of ALZ as awful tragic doomsday worst disease ever and her video or documentary kept repeating the same bunk.'"grandma doesn't remember me!" crying kids.

you do not and will not become a non person. if you find material that reinforces this awful misconception do not share it with your kids.

NiOTE: I was trying to eidt this and message kept disappearing so below is what I meant to say.

should not be posting before taking my cbd oil.  


TimVin
Posted: Thursday, May 26, 2016 10:20 AM
Joined: 5/26/2016
Posts: 13


I love that perspective and it is very helpful.  Thank you.
alz+
Posted: Thursday, May 26, 2016 10:20 AM
Joined: 9/12/2013
Posts: 3608


Maria Shriver thinks of ALZ as awful tragic doomsday worst disease ever and her video or documentary kept repeating the same bunk.'"grandma doesn't remember me!" crying kids.

This is always the scene where a kid walks into a room after not seeing Grandma for a year and asks the personw ith ALZ "Do you know who I am?"

That is a set up for failure and not evidence of forgetting anyone.

actually we do remember people even as they grow and change shape and look different. maybe we can not RECALL a name instantly  but I know they recognize energy and presence.  My Dad knew who I was when he could no longer move or speak, I saw it in his eyes, the way he reacted when I touched him.

you do not and will not become a non person. if you find material that reinforces this awful misconception do not share it with your kids.

what I want to tell my grandkids who are 6 and 3 is that "grandma has an illness and makes me talk slower and think slower. In our family, when someone gets sick, we all help in the ways we are able. I love you and always will and don't let anybody tell you otherwise!" with a big hug and smile. 

I am 8 years or more into this and doing better today than 5 years ago. 

Fair to say to your kids "I am going to go through some changes, but my love for you isn't going to do anything but grow deeper. We can handle this. Even if my speech is later impaired and I can not tell you so, I will be proud of you forever. I'm a lucky man." 


BillBRNC
Posted: Thursday, May 26, 2016 11:47 AM
Joined: 12/2/2015
Posts: 1018


TimV, I haven't had to tell children, but this weekend we are telling my 34-year old son and his wife. My grandkids are too young to understand anything like this, but they will in a few more years, but I'll leave that up to my son. Like I said, I don't know nothing from nothing, but I'm not sure I would consider 12, 14, and 16 to be children anymore, and I doubt they would want to be treated like children, particularly the 14 and 16 ones, and since the 12 one probably can't wait to be like his big brothers, he probably would hate being treated like a child too. Just me now, but I would tell them all at the same time, encourage them to ask questions, and I would be straight up truthful as you can with them. The 14 and 16 year old will be on the computer looking stuff up before you have time to spit, I would be anyway. After the group meeting, I would find a time to have a one on one conversation with your oldest, treat him like a man, and tell him you will be needing his help to take care that his younger brothers don't get too scared about all of this. I would let him know right off that you need for him to start stepping up to help you out. Make sure he knows his life isn't over, he's not going to be tied down, but I think it would be a mistake to sugar coat it to him, and possibly to the 14 year old, and like I said, I think you will find as you already know that they probably close ranks pretty tight when they need to. Just my two cents. Don't underestimate your kids. They are smarter and bigger than us parents might think they are. Heck, I still think of my son as being 12 years old or in high school. I sure don't think of him as having a PhD and being a young college professor. Good luck, because you and your family are going to need some as things progress, but your kids will truly help save the day for both you and your wife if you give them a chance to step up.
Mac50
Posted: Thursday, May 26, 2016 3:38 PM
Joined: 10/1/2015
Posts: 616


Welcome Tim,

I am so sorry.   Our son was 16 when my DH was diagnosed and like you we had been through two years of testing and waiting for diagnosis.   So in a VERY small way knowing was a relief.

The Nuerophychologist that my husband saw was great at USFM and I had talked to her and the social worker about how to break the news to our son.   He knew something was terrible wrong but I knew he had no idea what AD was.    

What we did was I sat down with Jack and explained that his dad was sick and that he had a progressive desease which meant he would not be getting better.   I let that sink in and then I took him to see the Nuerophchologist that my husband saw.   She went through the diagnosis with him, explained what physically was happening to his dad and why it was happening.   She meet with him for a couple hours.   We went to lunch an then he meet with her again for another hour.   It was great.   I don't know what exactly was said as I wasn't there but I think it really helped.   I would suggest not to give them too much information upfront but to let them learn and understand at their own pace,   I don't think Jack really realized until last year that his Dad would die from AD. But he has slowly adjusted.   

I think for Jack having the knowledge that something was wrong helped.   Life was very fustrating when we didn't know and my DH was very hard on Jack at times.  It is hard for them as the disease progresses to see so you and your wife need to keep an eye on them.   Hopefully you have family and support to help.

You didn't say what stage you are in.    Let us know as that may help m also with advice.

Let your wife know about the spouse board.   


madaleah
Posted: Thursday, May 26, 2016 3:56 PM
Joined: 1/10/2012
Posts: 13


Hi,  Unfortunately I have a lot of experience with telling young children.  Our girls were 6 and 8 when their dad was diagnosed and 16 and 18 when he passed.  My husband was a physician so we were very honest with them, at 6 and 8 it was just that "daddy had problems remembering things" as they got older I answered their questions as honestly as I could without trying to scare them.  My position was that I would rather they get accurate information from me and not rely on googling or asking peers, this approach worked well for my family.  I am happy to discuss further with you if you would like, there are not many of us that have the experience of explaining this to our young children.  I am so sorry for you and your family, please take care of yourself.
alz+
Posted: Thursday, May 26, 2016 4:13 PM
Joined: 9/12/2013
Posts: 3608


about the suggestion to tell young men/boys they need to man - up and prepare to take care of their father...

after reading about people on boards who give up their lives to the care of a parent, that can be a heavy burden as others run away. I think limits of what is expected would be more beneficial. My daughter is a natural caregiver, my son does not want to mention any of it.

A 12- 16 year old is doing a lot of firsts, driving, dating, school, college planning.

In my own situation with my own kids, I would have told them I expect them to live their lives and bring me stories. I guess I  told my near 40 year old kids just that! 

 I  live far away from my kids anyway and it took a lot of stamina and fortitude but my husband has become an excellent caregiver. that gives my adult children peace of mind.

Best to say enough to open hearts and doors, and reminders to "be good to each other" but not "I'll be leaning on you for diaper changes in a few years" type talk. I avoid the doomsday clock stuff as I found cbd oil works wonders and am doing better now than 5 years ago.

in 2 years there might be something to correct the cause, who knows? I suspect one of the first things kids do is search internet to find out if they are going to get it.

what do you want to tell your kids?


Peter5
Posted: Thursday, May 26, 2016 4:37 PM
Joined: 5/30/2013
Posts: 1194


This is about the age my 3 children were when their mother was diagnosed, although the symptoms were obvious to us much sooner.  I think Alz+ and Mac50 have great advice.

I found that the process of telling and educating my children was just that, a process, not a single moment in time.  Tell them simply and briefly at first.  Let them process that, then continue to provide "quiet" times when they can ask questions.  Let their questions guide you.

The hardest point for me to make with my children was that this was a terminal illness.  It wouldn't get better and it couldn't be cured.  The next hardest thing was to address their concerns that it would happen to them (because EOAD is usually hereditary). 

 


Peter5
Posted: Thursday, May 26, 2016 4:43 PM
Joined: 5/30/2013
Posts: 1194


One other thing that made a big difference for us was also trying to educate our kids best friends, and even the best friends parents, if possible.  As things get worse, being able to escape to a friends house for an hour or two will really help your kids.  If their friends are educated with accurate information, they will be an amazing support for your children.
TimVin
Posted: Thursday, May 26, 2016 4:49 PM
Joined: 5/26/2016
Posts: 13


Thank you Bill, for your wisdom. I appreciate it!  Very helpful and I agree.  They saw me persevere thru a cancer battle 5 years ago and I think in some ways they'll be glad it's not something like that.  My oldest is more mature than me in many ways and is a valuable leader amongst the brothers.  I like the idea of chatting with him separately right away.
TimVin
Posted: Thursday, May 26, 2016 5:06 PM
Joined: 5/26/2016
Posts: 13


Wow. I really appreciate all of the information, insight and  perspective.  All of it so valuable.  I really wanted to hear from those who've discussed with their own younger kids.  My wife add I are going back in for a meeting with the Dr. next week.  I don't know what stage yet, I understand that I'll know more soon.  I left a 20 year career as an executive/senior manager in the software industry last year due to the advancing issues of my memory and cognitive function.  I won't bore anyone with all the details which I'm sure are similar to what everyone else has witnessed.  I actually am relieved to finally have some clarity.  But my point is that my boys are aware of the symptoms themselves and know that it's a cause of the changes in my career situation.  It's actually been nice.  I used to travel all over the world and spent so much time on the road away from them.  This past year while tending to my health I've been able to really build closer relationships with each of them.  I want to focus on the fact that I have an opportunity to shape a future within these unfortunate circumstances and lead my family with a sense of humor, honest vulnerability and stubborn optimism.  
TimVin
Posted: Thursday, May 26, 2016 5:09 PM
Joined: 5/26/2016
Posts: 13


Thank you!
llee08032
Posted: Thursday, May 26, 2016 9:42 PM
Joined: 5/20/2014
Posts: 4408


Tim,

Welcome and thank you for joining our board. You have your hands full with those ages with early and middle adolescent stages of development. Voices changing, hair, education and career planning and then there is the girlfriends.  So sorry to hear about your diagnosis. Take your time and go with your gut about the right moment and time. The boy's will bounce off of you and your wife and how you both are taking the diagnosis. Don't hesitate to consult a professional who works with youth. They are going to be very curious and you need to prepare them for all the negativity and to quote alz+ "doom and gloom" around AD. The general population knows very little about AD and other dementia and view it as an older persons disease only. Most importantly make sure you and your wife are on the same page and feeling ready to tell them. They need to know that you are not going to fall apart. 


wwkayaker
Posted: Wednesday, June 1, 2016 5:19 PM
Joined: 3/4/2014
Posts: 32


Hello TimVin I told my daughter then age 11 that I had a memory disease and was taking medication to help with it.  Initially she had no immediate response but said she knew something was wrong with me memory wise.  As she got older and the disease progressed  she gathered a lot of information from the internet (a mixed blessing) and now is an expert.  She has no problem in working to increase folks knowledge about Alzheimer's and has run fundraisers at her high school as well as participated in the association's memory walk.  I would consider letting your boy's school know what is up but talk it over with your boys first they may disagree and I would honor their feelings.  In our case a counselor at school was very helpful and provided her with support and someone for her to bounce her feelings off of.  We as a family have not hidden from anyone my diagnosis and reactions of others has been variable from supportive to never going to hear from them again.  It would be great if there were groups for kids going through this but  there are not a lot of kids in this situation and usually its a grandparent who is diagnosed.  Reassurance that you are still dad and will be around to share in their life achievements I think is important/helpful and please  know there is a life after diagnosis. Wishing your family all the best.
TimVin
Posted: Friday, June 10, 2016 8:18 PM
Joined: 5/26/2016
Posts: 13


Thank you so much for the insight wwkayaker!  I really appreciate your advice coming from an identical perspective.  Best- Tim
Iris L.
Posted: Saturday, June 11, 2016 12:19 AM
Joined: 12/15/2011
Posts: 18342


Hello, Tim.  I did not meet you earlier, because I do not have children at home, and I could not respond to your query.  But I still want to welcome you to this online support group.


Years ago, one of our emeritus members, Tracy/Younghope, started a summer camp with her chapter for children of Young Onset AD patients.  It was called Camp Building Bridges.  You might find information about it from earlier years if you use the Search tab.


It probably is too late to begin a camp for this summer, but perhaps some of the YOAD patients can get together for next year and have a one or two week camp session for their children who are dealing with YOAD parents.  It would probably involve some fundraising, and contracting with an existing summer camp for one or two weeks' time.  This way, the children could have a chance to meet other children in their situation, from around their own state or area.


Please keep us updated on how you and the children are doing, Tom.


Iris L.


Mimi S.
Posted: Thursday, September 8, 2016 9:07 AM
Joined: 11/29/2011
Posts: 7027


Hi all,

It's important for all of us to realize that Tim's particular diagnosis is FTD and so the path the disease is apt to take differs from the typical AD. As far as my memory goes (ha) FTD has several sub-divisions. Probably time will tell which type Tim has. And, of course, he could have more than one.

Thanks to all who have contributed their personal experience. 

Anyone out there who is dealing with an FTD diagnosis and still has children at home? 


TimVin
Posted: Friday, September 9, 2016 7:57 AM
Joined: 5/26/2016
Posts: 13


Thank you Mimi
TheSteven
Posted: Friday, September 9, 2016 8:19 AM
Joined: 10/11/2014
Posts: 167


Hi Tim,

My son was 17 when I was finally given the Younger Onset Alzheimer's diagnosis in 2014. But he knew things were wrong long before when I would drive past his doctor's office for his appointment or take the wrong turns taking him to his Kumon tutoring class. When the kids are correcting you then you know they know and they are paying attention to you and your actions. Your kids probably noticed things about you too so it may not be a surprise to them. I told my son about it but also told him that I was not giving up searching for ways to to beat it.

In 2011 my PET scans indicated a possibility of FTD since there was hypoglycemia in my temporal regions, more pronounced in the left than right but also in the cerebellum. I researched FTD and Pick's in particular as the worst case scenario and researched alternative treatments since the doctor's couldn't be sure what the problem was other than say it is just depression and give me antidepressants.

My 2014 diagnosis turned my search for alternative treatments in a different direction and my wife found that mercury dental fillings might be my root cause so I continued in that direction. If you have those dark “silver” or “amalgam” fillings then those are 50 percent mercury and they cause 40 different diseases and conditions, including cancer. (Every cancer cell has mercury in it http://drsircus.com/medicine/cancer/mercury-and-cancer-research-dental-amalgams ) It could be the cause of your FTD.

I removed my mercury amalgam fillings and did mercury detox and stopped/reversed some of my cognitive issues. I was diagnosed with Younger Onset ALZ and they have now changed it to Mild Cognitive Impairment after seeing my improvements. See

http://amalgam.org/education/scientific-evidenceresearch/results-removal-amalgam-fillings/ or

http://www.fda.gov/ohrms/dockets/dailys/02/Sep02/091602/80027dde.pdf

I have more links to this type of information and videos about this in my July 4, 2015 blog entry at http://thestevenalztreatment.blogspot.com


HistoryGeek
Posted: Tuesday, September 20, 2016 12:59 PM
Joined: 6/16/2016
Posts: 33


Tim you are not alone. I am 47 and diagnosed with MCI/early onset dementia. I was diagnosed at 46, last year. At that time my kids were 14 and 17. Their mom and I sat them at the dinner table and talked about what was happening, also how they could help, so that they could be a part of what's going on and make them feel like they are helping dad. Small stuff like reminding me of tasks, looking to see if the oven or burner was turned off after I had used it. Get them involved. It's therapeutic for them.