H

Merla

M1

I'd look for children's books about dementia. They are bound to be out there, perhaps if you find a good one you could post it.

harshedbuzz

@Merla

I am so sorry. You must be disappointed that your mom can't be the kind of Nana your little ones deserve.

There are books explaining dementia to kids her age.

Amazon.com : dementia books for kids

That said, many PWD aren't as into kids as one would expect. Sometimes the noise and energy of small children is off-putting to them causing them to avoid or even "discipline" them harshly. Sometimes a PWD will glom onto their caregiver as a kind of personal property and will compete with kids for attention. There was a woman her who used to provide childcare for a preschooler while watching mom. The PWD didn't enjoy any of the child-centric activities like visits to the playground and would act out. Once in a fit of pique, she spray the child with a can she believed to be Raid.

My son was about 10 when dad's first dementia behaviors started almost a decade before he was diagnosed finally. I made the mistake of mentioning my concerns about dad's darkening personality and memory issues which made him feel threatened by me in particular. Because he remained manipulative well into the disease process, he said and did mean things to my son as a way to piss me off and keep me from visiting him. As a result, I made my visits/well checks to MD and FL by myself about 6 times a year to limit DS's exposure.

My son has high functioning ASD, so he was pretty familiar with the concept of neurodivergence and was pretty accepting of dad's behavior in the context of brain damage as he got older. He became a critical member of my "village" when I moved my parents north his senior year of college. But early on, I protected him from dad's behaviors.

HB

psg712

I would be as honest as you can. Your daughter is astute enough to notice and concerned enough to question these behaviors. You want her to be assured that you will always be truthful with her and that its ok to bring up her concerns. . At five, she doesn't need a medical explanation, but something like "Grandma's mind isn't working the way it used to" and that this causes her sometimes to forget birthdays or her manners or to feel confused or upset ... you could remind her that being courteous or kind sometimes means we don't bring up the fact that someone's outfit isn't pretty or their teeth aren't straight...Grandma can't help her behavior.

My son is growing up watching my mom's mind decline. He has been able to contrast this with the physical decline and death of his other grandmother, who was older than my mom but mentally much sharper. At ten, he has now heard the word dementia and knows its a brain sickness. We also went through the birthday issue and he knows that I buy grandma's gifts to him. He cherishes a stuffed dog that my mom chose for him herself when her was three. He has given me reality checks like " mom. You know she can't understand that" when I make the mistake of trying to explain things to my mother!

He complains at times about the frustration and inconvenience of her care. I allow him to vent and tell him that these feelings are ok, that I have them too sometimes, but we do what we have to because we love her and she is part of our family, even when she can't remember that. I do keep watch on her behavior toward him and will limit contact for them if I see that it is becoming hurtful to him.

CatsWithHandsAreTrouble

Hi Merla. You're doing your best at trying to be a peacekeeper between your daughter and mother. That is wonderful! I think you might be too hung up on your mom not having an official diagnosis. If it looks like a duck, acts like a duck, do you really need to get the taxonomy assessed to tell your daughter it's really a duck?

Be as truthful to her as you can, yes. There is no harm telling her that you suspect grandma has a brain disease and cannot adhere to societal expectations as typical of others. Tell her it's okay to be different, that's it's okay to feel conflicted and unsure about things. She's at an age where she's still taking in social cues from around her at a fast rate so since Grandma no longer can, your daughter is picking up on that easily.

It's tough for sure! You're doing your best. It's okay to limit your daughter's interaction with her grandma if it causes them stress, or even you stress.

housefinch

I’m a pediatrician and, frankly, I would get the dementia for children book as recommended above. I think your first loyalty needs to lie with your own children before your mom. You have an intelligent, emotionally savvy 5 year old who is showing signs of stress and confusion about the situation. It is unfair to her to tiptoe around the topic. This is sending your daughter the message that she isn’t really seeing the behaviors she’s seeing. That is incredibly confusing and distressing to her and is teaching her not to trust herself and not to trust answers you give her.

Ultimately, whether you are ready or not, the lack of insight into her dementia that the disease causes will make your mom angry at any messenger who says she has dementia. Based on your description of her behaviors, she probably has it. And she is likely past the point of accepting that diagnosis from anyone—neurologist, neuropsychologist, trusted PCP. She will probably be angry at any of them.

For your daughter’s sake, please be truthful with her.

Emily 123

https://alzconnected.org/discussion/comment/189094#Comment_189094

Merla, I agree. You can certainly tell her that her grandmother needs a good night's sleep to be able to feel good the next day. Send the baby an Amazon gift and say it's from Grandma. I'm willing to bet if the 5 year old tells Grandma she sent the baby a gift, Grandma's disease will make her think she has.

I was wondering if you'd had a chance to look through either of these? They're very helpful:

Understanding the Dementia Experience: https://www.smashwords.com/books/view/210580

Tam Cummings assessment tools/AD checklist https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

One of the first things I noticed (in hindsight of course) was that my mother started being very erratic in her phone calls-she used to call every weekend for years, then...not so much. I thought she was busy, but it was actually the begining of her disease progression. She was starting to forget if she had done daily tasks, and so was assuming she had. So don't take it to heart that she's forgetting special occasions. She probably doesn't realize she's not called. As the disease progresses your mother won't be able to hang on to information very long, and she'll also start to lose memories in the order of 'last in, first out', so it may be that she hasn't been able to hang on to cues about upcoming birthdays or even recall the more recent births in the family.

The disease will remove some social filters, so behaviors may become more pronounced. Apathy and a loss of executive function occur, so tasks don't get initiated or completed. Doing multi-step tasks becomes difficult because putting the steps in order becomes a challenge.

Her secluding herself isn't uncommon, but is protective for her. She very much needs routine to get through her days, and she likely may have some awareness that she isn't remembering things well, and so chooses to not be in a situation where that might become obvious. When pushed beyond their comfort zone the person will want to be back at their secure place, and focus on getting there. That may explain why visits with her have changed. You or one of your siblings might want to do a visit in her own home over 48-72 hours that would show where she is in her disease progression. I do recommend browsing the threads to get a feel for what does and doesn't work when dealing with a parent with dementia and getting them diagnosed.

Marta

Merla- your Mom can no longer function as she once did.

Please do read Understanding the Dementia Experience for perspective.

The sooner you let go of your expectations, the calmer you will feel, and more accepting of the mom you have now you will be.

harshedbuzz

https://alzconnected.org/discussion/comment/189304#Comment_189304

@Merla

I felt this as well.

I really struggled with the admonishment that it's the disease talking with my dad. Dad and I never had an easy relationship and I wasn't his favorite-- that was my sister whose death triggered dad's spiral into an alcohol-related dementia. It was hard to embrace the notion as I had heard these scripts as long as I can recall. Dad's geri psychiatrist said he likely had untreated bipolar disorder based on family and personal history; I have a friend who is a clinical psychologist who knew dad pre-diagnosis who suspected psychopathy or borderline personality in the mix. It is so hard to draw a line and say "This is side is dementia and this one is just more of dad being dad".

As dad lost his social filter, he was less able to present his public persona reliably and other people started to see who he was all along. What's interesting is that, in retrospect, I picked up on the subtle early changes that come with dementia as early as 2005 and significant memory loss by 2008. My mom was in denial for almost a decade brushing my concerns off as me just not liking the man until she almost died with him as her medical advocate. He was diagnosed in 2016 after a psychotic episode triggered by drinking.

What helped me come to terms with him in general and specifically in the context of an ARD dementia and Alzheimer's was parsing them both as an illness over which he had no ability to control. In a lot of ways when I parsed the mental illness in a similar manner to DS's ASD as something that makes life harder for him it became easier to find compassion. YMMV. But thinking about the behavior health issues in the same way I would any other illness helped me not be so angry all the time.

I still limited DS's interaction with him from the time he was 10 until about the time he was 14. It was hard because dad would get wind of some milestone-- DS's Eagle Court and graduation from dad's alma mater notably-- from my mom and invite himself and attempt to make it about him. It was easier for me because they lived at a distance and because DS was older.

HB