Helping kids cope with grandparent with dimentia

[saraha]

My dear MIL has really gone down hill in the last few months, culminating with this weekend when she was convinced and trying to convince everyone else that there was something hiding in the creek that wants to harm us, and on a separate day this weekend asking one of her grown grandsons who came up to hunt to "watch for planes above the clouds"

Everyone has been watching her slow deterioration and she has seen a neurologist and doctors etc, and her children are making more appointments etc. but what I need help with is talking to my kids. For the last two years, they have gone up to mil and fils weekly to dust, clean bathrooms, sweep, wash cabinets, whatever else needs done, taking dinner and having a right old good time for the evening. For the first time she said she didn't want them to come. Fil was surprised, but acquiesced so I am going up alone to drop off their dinner. Sil and I share cooking duties several days a week, plus fil can fix basic things himself. We will have to figure out what to do next since their house will still need to be cleaned. Fil is heartbroken over this since he loves having the kids up weekly, but he won't go against her wishes for anything (unless she wants to do something dangerous or completely out of the question) There is so much that needs to be figured out, and we are working on it. I don't foresee the ban as permanent, but it was truly the first time in the history of the world that she has not wanted her grandkids (any, not just mine) to not be around.

I explained to the kids what happened over the weekend (we weren't actually there) and that their Mammom has entered a new phase. Their feelings are running the gamut as appropriate, but I know that up til now they were just going with the flow, but I am sure grieving is coming. They haven't had to deal with a significant loss yet. How do I help them through this process?

Edited April 20, 2021 by saraha

[Catwoman]

I wish I had some advice for you, but all I can say is that I’m so sorry your family is going through this.

[MercyA]

Your family sounds amazing! What a blessing to your inlaws.

I'm so sorry you're going through this.

[saraha]

Yeah, I hit the lottery in the In Law department.

ETA: I miss read MercyA’s comment, but I just wanted to say I wasn’t trying to be sarcastic. I really did hit the lottery, my in-laws are fantastic and it’s my pleasure to help them

Edited April 20, 2021 by saraha

[BusyMom5]

Hugs to your kids.  It is hard.  I do think its good that they see you all helping out, giving her grace, and working together during this phase of life.

[Alicia64]

42 minutes ago, MercyA said:

Your family sounds amazing! What a blessing to your inlaws.

I'm so sorry you're going through this.

That's what I was thinking!!

(((Saraha)))

[Innisfree]

I think I would just reiterate that physical changes in her brain have caused the change in her thinking and behavior.  It really isn't her, in her proper mind, saying that she doesn't want to see them. It really is the disease.

Your youngest is ten, right, if your signature is up to date?  That's probably old enough to understand, on an intellectual level, which isn't everything but does help. Have they seen her hallucinating about other things? I would remind them of those occasions, to help put her refusal to see them in context. Also, I wouldn't assume that she'll keep feeling that way. By the time you're ready to go clean, she may have forgotten she didn't want them to come.

I'm sorry you all are facing this. Delusions were the worst part of my mother's dementia. Sending lots of hugs.

[prairiewindmomma]

This is a really common problem.

We dealt with full-on paranoia and delusions as well. 

I would make a memory album now with stories and photos while those are still fresh as the dementia bit can stretch on a long time.  Making the memory album helps them have something tangible to hold onto when the person in front of them is not who they used to know.

 

[Catwoman]

One other thing you might want to stress to your kids — mainly your youngest son — is that this is not something that happens to everyone as they age, and that just because Grandma has dementia, it does not mean that you or your dh will get it when you get older. Dementia is scary enough for adults who understand how it works, but it can be even scarier for kids who might worry that it could suddenly happen to Mom or Dad. 

I feel so sad for your family. 😞 

[saraha]

So last night was cleaning night. I made one of her favorite dinners and we went like fil wanted. She knew we we were coming as she told sil that her grandkids were coming to help her.

when we got there, fil was out in the barn and she was inside reading her bible. At first she just ignored us, and we all scattered to do our jobs. Then one of my daughters came while I was scrubbing a very dirty tub crying and saying that when she went into the room to dust, mil started praying loudly that we would leave. She just left the room. About that time, oldest Hollared through the house and out to the barn that dinner was ready. One daughter was still vacuuming. Fil came in, went to get mil. Mil started crying (we couldn’t see her, we were in the kitchen) and telling him to make us leave (vacuuming daughter overheard this exchange)fil lost his patience and he said no, he was having dinner with us and if she didn’t want to she could just sit there. He came into the kitchen and vacuuming daughter came in after so he wouldn’t know she saw the exchange. Shortly after he started saying grace, she came in and sat down.

now here is the part I don’t understand. For the next hour, she was like mil from a year ago! She engaged, laughed at jokes, kept up with the conversation and  was just her sweet normal self that I haven’t seen for a few weeks! She hugged each of the kids, told them she loved them etc.

I don’t know what to make of it. My sensitive dd just broke down after we got home saying she didn’t understand how one minute she was shouting to the Lord to make us leave the house, then the next minute be her old self.

 I ordered some books recommended in the other thread but they haven’t come yet.

fil is so lonely, I’m sure. His family is very close as we all share the farm work and their house always has grandkids and now great grandkids running in and out, but her unpredictable behavior has caused the ones with littles to come around less as they don’t understand why she would tell them she doesn’t want them there etc.

We stuck it out and then she was fine, but not everyone is willing to have their littles there and see if it shakes out.

Im just not sure how to proceed

Edited April 28, 2021 by saraha

[prairiewindmomma]

Brains are crazy things. With my own grandmother we went from talking about my own children coherently to her seeing chickens in the room and needing to go feed them (a chore she had as a child) to agitation with her husband because he wasn’t home from work yet (he was in the next room) and back to her asking me about what happened next in the story I had started. All in 5 minutes.

FIL is clearly needing more support. 

Her agitation was likely to the noise and change in level of activity. You might try having someone (teen or older) take her outside to talk on the porch while the distraction goes on inside with cleaning. 
 

As I mentioned before, what are the long term plans? Y’all need to be working that out with FIL and all of the children now including a plan for him to be with other people on a regular basis. 

[prairiewindmomma]

Fwiw, when it became personal, we set up a structured time. We brought a treat (pie and icecream usually) so everyone was eating, had a structured conversation I was prepared to carry entirely. I did chores separately without kids.

[saraha]

 

1 hour ago, prairiewindmomma said:

Brains are crazy things. With my own grandmother we went from talking about my own children coherently to her seeing chickens in the room and needing to go feed them (a chore she had as a child) to agitation with her husband because he wasn’t home from work yet (he was in the next room) and back to her asking me about what happened next in the story I had started. All in 5 minutes.

FIL is clearly needing more support. 

Her agitation was likely to the noise and change in level of activity. You might try having someone (teen or older) take her outside to talk on the porch while the distraction goes on inside with cleaning. 
 

As I mentioned before, what are the long term plans? Y’all need to be working that out with FIL and all of the children now including a plan for him to be with other people on a regular basis. 

Unfortunately there seems to be no long term planning going on. Everyone knew this day would come, her mother and 2 of her brothers had dementia, but estate planning was as far as it got. I am the wife of the youngest son, so my job is to do what I am told. I was able end of last week to cut through the chatter and suggest she get tested for UTI. After BIL independently verified this could be a real thing with a psychiatrist friend, an appointment was made, so you see where my standing is.  She did have a UTI and is being treated. No change in her behavior so far. FIL definitely needs a break but absolutely will not leave her with someone. She won't let him out of her sight and is very jealous of anyone who has his attention, which as you can imagine on a working farm with lots of activity and people around outside can be a big deal. Dh's siblings are both VERY strong personalities and are pretty much trying to run the show, which means every conversation ends with Well Daaaad, you really should being doing xyz, and on top of everything else, he is pushing back because he has always been the one to do the telling, not the other way around, and is probably feeling a bit bullied. At least that's what dh thinks.  I don't know. It's like it caught everyone by surprise for some reason.

Thank you so much, for the bolded especially, it was like whiplash, her behavior. So we do it all again next Tuesday, I will try to see if coaxing her outside while we get the work done is a possibility. We tried to scatter so as not to overwhelm her, but she must have been anyway. I can't really do it without the kids help as it is a big house and I only have so much time between work and all my other responsibilities. Spring is also our busiest time of the year on the farm and all our respective homesteads.  Sil told dh that mil tried to pray her out of the house this morning while she was there trying to pay bills. Such a weird thing, she followed her from room to room loudly calling on God to send her away. I guess this is a thing now. I just can't figure out how the kids can fit into all this, because fil definitely does want the kids around.

Anyway, thanks for listening.