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Explaining Dementia to young children
Andtay
Posted: Monday, October 28, 2019 5:41 AM
Joined: 10/28/2019
Posts: 1


hi just after some advice on how to explain my mother declining health to my young children 4 and almost 2 with out scaring them.

Mum has early onset frontal lobe Dementia and Alzheimers. Today she had a toilet accident which my daughter discovered after my parents left it was very upset and hard to explain. 

So far o have told my daughter (4) nanny is sick part of her brain has become unwell and isn’t working like it should so she forgets things and gets confused. 

Any other ideas???? 


harshedbuzz
Posted: Monday, October 28, 2019 6:20 AM
Joined: 3/6/2017
Posts: 2213


A lot of people like Maria Shriver's "What's Happening to Grandpa?" book. It's about Alzheimer's but as you would likely read it to your children, you could tweak as needed.
RanchersWife
Posted: Monday, October 28, 2019 8:55 AM
Joined: 3/14/2018
Posts: 253


My boys are 19, 17, 14, 11 and 6.  We've been doing this for 2 years.  My mil lives in a tiny house next to us.  When my youngest was 4 he and Grandma had a wonderful year where they met eachother's needs for communication in the most beautiful way.  If you can, try to set up scenarios where they can interact in a successful way. Grandma dishing out ice cream, coloring, watching PBS...
When it happens it's truly magical.  My youngest has become more active and busy and Grandma has slowed down but they still connect.  I often find him on Grandma's couch with a bowl of ice cream and her remote. She will be grinning like crazy. I do have children who are not quite able to process the changes they are seeing without a lot of sadness.  Each deals with it differently.  My tone and coping level matter...moreso with the sensitive kids. My 14 year old drinks coffee with her every morning while my husband makes breakfast.  It's hard to find the right balance of giving them the facts and just letting them be with her. The hardest thing is when she rejects their offer to help or interact.  Usually that happens when she doesn't understand her surroundings or them.  For example, i can't send the 11 year over to borrow an egg.  She wont give it to him. That's when i have to say that she has loved them since the day she found out I was pregnant and her actions are because her brain isn't working correctly. 

If things are peaceful you could try little projects at the table or whatever gets them to focus on eachother.  Then your child might become more accepting of Grandma's behaviors...well not the mess in the bathroom.  That's unfortunate. I've noticed that knowing Grandma well makes the kids more responsive to her and helps us all. 

I don't know how long this will last but i know we are teaching our children important life lessons (about sacrifice, love, strength, family,...) when they watch us care for our parents.  Spend the time, make the memories and enjoy the good times.  


Eric L
Posted: Monday, October 28, 2019 10:33 AM
Joined: 12/5/2014
Posts: 1288


We lived with my MIL for the entirety of her dementia journey. We moved in with the in-laws almost 8 years ago. MIL was diagnosed almost 5 years ago. However, she was showing signs when we moved in (and in retrospect, a year or two before that). She passed away at the end of September. Our kids are currently 11, 9, and 6. They saw the good, bad, and the ugly with her.

I'll be honest.. we didn't find many books that actually helped. The book by Maria Shriver is okay, but it's more geared towards a 3rd or 4th grade level. A couple of the other books that we bought (I can't recall the titles) were sort of okay, too but they kind of trivialized things and didn't really help us answer any questions. The books we found focused way too much on the memory issues and didn't even begin to address the difficult behaviors or issues with incontinence. 

What we really found that worked best was to answer questions as honestly as we could. Their grandma had some really difficult behaviors in the last couple of years, so it could be tough at times. I'm not sure if they ever asked us about potty issues, but if they did, we would have told them that "grandma's brain makes her forget things. it forgets to tell her how to go to the potty and sometimes she has accidents". When she stopped walking and became bed bound we told the kids that "Her brain doesn't know how to tell her how to walk anymore".
MN Chickadee
Posted: Monday, October 28, 2019 1:39 PM
Joined: 9/7/2014
Posts: 1033


 

My mother started showing pretty significant signs when my oldest was about 2, she is now 7 and has a 3 year old sibling. Even when we had said nothing about grandma or an illness, she still knew at a young age. She knew the rules were different with grandma, that she was different from other grown ups. She didn’t really require an explanation at age 2. Around age 4 I started saying that grandma's brain had a problem. That it made her forget things, and sometimes behave in ways most grown ups don't. It means she can't help it and we love her anyway and help her best we can. We talked and expanded on this as my daughter got older.  I later told her the problem with her brain was called dementia. When the time came to move mom, I told my daughter that grandma’s dementia was affecting her ability to take care of herself, that she had forgotten how to do that and it was too much for grandpa now, so we were moving her to a place that had people who could help her.

 

I always kept explanations simple, answered questions as honestly as I could. The kiddo kind of directed what she was ready for with questions. They are so observant and some times pick up on stuff you don’t even realize. I would just keep it calm, and emphasize that grandma can't help it and that means we need to be understanding and extra helpful. 

 


RanchersWife
Posted: Monday, October 28, 2019 3:23 PM
Joined: 3/14/2018
Posts: 253


Also, Eric is my hero.  He's managed this with small children.  I don't have the number of adults helping that he had but maybe my husband and i will still manage.
kelantol
Posted: Saturday, November 2, 2019 9:33 PM
Joined: 5/3/2013
Posts: 412


We told my grandson, around the age of 2, that my mother's "thinker is broken".  So when she's being extra nice and sweet and knows what to do, it's because her thinker is working right then.  When she is not being nice, or doesn't know what to do, well, poor "Puppy" has a broken thinker so she can't help it and we can go find something else to do. (Puppy was the name she was given because she doesn't go anywhere without her dog!)
fordham
Posted: Saturday, July 4, 2020 11:13 PM
Joined: 10/22/2016
Posts: 5


My Dad moved in with me three weeks ago. He has vascular dementia. Today his paranoia has been focused on my 6yo daughter. He says there is "something evil happening there". She is a sweet, helpful, curious child who loves her grandpa,but is still adjusting to having him live in our house. She tests limits with him, just like she does with me and her Dad. I talked to her about not arguing with grandpa and that he is an adult who she has to respect.

My dad is very agitated when she is around (which is always, cause Covid), and telling me privately that he is "scared of her".

I'm having trouble with validating him on this one and appreciate advice!

Thank you for reading!


MN Chickadee
Posted: Sunday, July 5, 2020 9:57 AM
Joined: 9/7/2014
Posts: 1033


Fordham, my mother had a very difficult time with young children. They easily overwhelmed her - the loud voices, the movement, touching stuff she didn't think they should, the excitement and bouncing around was waaaay too much for her. It seemed her sensory inputs were very easily over loaded and kids are a whole bunch noise and movement and excitement. She would pick on my then 5 year old quite a bit. We had much of the same dynamic you have, which is why I decided I could not care for her in my home and moved her to MC.  A 6 year old isn't going to be able to not act like a 6 year old around him. It's not a fair expectation, in my opinion. Grandpa is unable to be accepting of kid's behavior due to his illness. Neither of them can be expected to be a solution in this situation. We had to manage visits carefully. I didn't think it was fair to my daughter to be put down and constantly scrutinized and reprimanded. I taught her to respect Grandma, be patient and let stuff roll off and we talked about how she had a disease and she couldn't help it so we had to be extra understanding, but I also shielded her from being subject to the manipulation and harsh words. I had to not leave them alone in the same room, bring activities for kiddo to do to keep the energy level at bay, keep the visits short etc.  I would strive to keep them separated as much as possible.  He needs quiet quarters he can be in where the kids don't go. As for how off-putting it is to have someone call your child evil and all that, you have to let it go. Chalk it up to his brain malfunctioning and validate him as much as you can. I'm sorry you are scared, Dad. Kids can be a lot to manage, can't they. I bet I was a challenge too! Oh I remember that time I did xyz. What a mess! But now I'm all grown up and here to take care of you. And distract with a treat. But validating can only go so far, and you must remember the kids should have a right to act like kids in their own home.  It's their one and only childhood. Honestly, if your home doesn't have physical space to meet everyone's needs, to spread out and separate kids and grandpa as needed, I would look at different care arrangements. Just my two cents. Good luck, let us know how things go.
Stuck in the middle
Posted: Sunday, July 5, 2020 1:02 PM
Joined: 6/4/2017
Posts: 361


Andtay, I have always found it best to tell children the simple truth.  When I was three, my parents told me Grandpa sat in a chair and didn't speak because he had a stroke.  When I expressed surprise that he did not thank me for the glass of water I gave him, they told me that did not mean he did not appreciate it, it simply meant he could not speak.  It worked for me.

Many years later, I told my three year old "Mama is in the hospital because she is ill, and she will come home when she is better."  It worked for him.  

I don't embellish with information they didn't ask for.  You may recall the old story about the parent who responded to the question "Where did I come from?" with a detailed explanation of the birds and the bees.  The child said "Oh, Larry said he came from Cleveland." 

 


Stuck in the middle
Posted: Sunday, July 5, 2020 1:08 PM
Joined: 6/4/2017
Posts: 361


Fordham, your daughter is being emotionally abused, and is in danger of physical harm.  Your father needs to move out yesterday.  Don't wait until she shares her home experiences with a teacher next month and lands in foster care because you failed to protect her.
fordham
Posted: Sunday, July 5, 2020 1:23 PM
Joined: 10/22/2016
Posts: 5


Thank you all for the replies. We moved Dad in three weeks ago after lengthy consultations and strong encouragement from his doctors and in home health providers. I am dismayed that they did not caution us about the potential for negative interaction with our kids. We have Dad on multiple assisted living waitlists and are trying our best to figure out financing. We agree that this is not a sustainable situation and are looking for places for him to go. Any advice from other Californians is very welcome.

Thank you


Stuck in the middle
Posted: Sunday, July 5, 2020 3:11 PM
Joined: 6/4/2017
Posts: 361


Fordham, I spoke too strongly.  I am sorry.  You could not have known your father's disease would take this form.  But since it has, it has to be dealt with.
trouble77
Posted: Monday, July 6, 2020 3:39 PM
Joined: 5/19/2020
Posts: 22


my dad and step mother kept my grandmother home as long as they could but in the end they had to move her to assisted living and now she is in a home that takes 3 patients at a time..as far as explaining to the young children i would say what u have been saying...
 
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