Dementia Support Group

gramma seems to be getting up at all hours lately and demanding coffee. if we're not awake she will bang on our door or every door in the hallway til she gets someone up to get her a cup of coffee. really?? not sure how much more of her 24/7 demanding i can handle.

and then she was up again at 6 am... i'm getting very little sleep these days. is this normal?

It is normal for people with dementia to have their internal clocks all messed up, so yeah, sometimes they think it is morning in the middle of the night and expect everyone else to be up and ready to go too (apparently with coffee).

Not everyone demands things, some just ask repeatedly (but if they do that often enough it keeps you from sleeping just as much) so that may be more of a personality thing, or it may reflect something about her perception (like if my Grandma thought that we had all been conspiring against her she would be a lot meaner than if she had understood our conversation, even though it wasn't anything we actually did differently).

I think a lot of it is how much she is depending on YOU specifically to do things. I know she tends to be suspicious of her Grandson, but if she will take coffee from him (or if there is anything he can do even not hands on with her) to help give you a chance to get some rest I would talk to him about it. It is tough to be a caregiver even when there are two of you able to work as a team, when she won't let one of you do much it gets even harder. You may have to start taking cat naps when she does sometimes if she keeps up her weird sleeping schedule.

That and make sure to have decaf coffee around....the last thing she needs is caffeine at 1 am!

i've noticed the caffeine thankfully doesn't keep her from sleeping. doesn't seem to affect her. (other then making her less grumpy)

unfortunately i'm the light sleeper in the house so i'm the one that hears when gramma comes out of her room. he usually doesn't even notice if i get out of bed to do anything, much less hearing her rummaging around in the kitchen. and he's also going to college so he needs more sleep then i do. or at least needs it on a more consistent schedule anyway.

it seems every day i learn something new about gramma and her conditions. unfortunately they are things i almost wish i didn't find out. tho gramma and i make a good pair sometimes... i have fibromyalgia and i get into those fibro-fog times and have problems remembering things. my short term memory can be really short term sometimes. thankfully tho, not nearly as short as gramma's!

just when i start to get into the mind of accepting how gramma is, it seems like there's a new issue to deal with when it comes to dementia. like another wrench is thrown into the mix. thankfully i wasn't able to get into college this semester with him or there's no way at all we'd be able to have gramma here and both of us trying to study and get decent sleep.

she depends on me for almost everything. i was coming into the living room last evening and gramma said "oh good you're here". i asked her why and she told me because she couldn't find her bedroom. i pointed right behind her and said, "but gramma, matt is sitting right there, he can show you where it is." she got this pissed off look on her face and said that she wouldn't ask him for anything. *sighs* so it's just me doing as much as i can and him helping by giving me naps when i desperately need them.

i think part of why she's more dependent on me then she is him, is because i am more calm and understanding with her. he gets all grumpy having to say the same things a million times and kind of shows that grumpiness when he tells her things or gets her things. his bedside manner isn't that good. not that they had a great relationship before she started going down hill and living with us, but it's definitely well reflected in their actions now a days.

i do thank you so much Mary for always being there and helping. i do appreciate it more then you know. i just get so frustrated and flustered and can get in the wrong headspace and i don't want gramma thinking of me like she thinks of matt. i want her to think of me as being loving and helpful.

oh, another question.... do we tell gramma what's going on? like that she has dementia and is having tiny strokes? or do we just kind of walk around the questions when she has them? i'm not sure if it would be helpful to tell her or if it would do more harm.

thanks again!

If she wants to know what is wrong with her, or seems to be aware she is losing time or is concerned about it, you can tell her that the doctor thinks that she might be having tiny strokes that last only seconds to minutes, but that they are working on getting a treatment for them and she may be starting a new medicine soon for them.

If she doesn't seem to notice or ask any questions or seem concerned that she is having memory trouble then I wouldn't go into the details. I guess I would try to take the cue from her. She has a right to know what is going on with her health, but you don't want to dump tons of upsetting information on her if she doesn't want to know it (and you certainly don't want to tell her over and over trying to force it into her memory...it may just not go, but make lots of miserable conversations).

When you do tell her, I would emphasize that she has and is seeing doctors and specialists and they are working with her on it and that she either has or probably will be getting some medication to help so that she knows that she is not facing it alone.

It is a strange thing, being a caregiver. We work hard to take the best care we can of our person and we find ourselves sort of matching them in pace and energy so that we don't overwhelm them. It is intensely draining and frustrating keeps you up at weird hours and asks the strangest tasks of you sometimes (I have had weirder conversations caregiving than just about anywhere), but in the end you find that you really really love whoever you have been taking care of. You put their wellbeing ahead of your own desires and sometimes you just enjoy seeing them happy more than you ever thought you would even when it is something really simple like helping them find their way somewhere. It definitely makes a bond. It sounds like you are doing a great job, just keep trying to be sure to catch naps when you can and take care of yourself too as much as possible.