I don't mean the deficits themselves are getting on my nerves. I know she can't help the fact that she has the dementia. It's when her old and life long personality traits of arrogance and independence combined with her narcissism get her on rolls about the things she's going to do, that she can't do.

For example we live in a water area and she keeps talking about wanting to get a pontoon boat, insisting she can drive it and park it in the inter-coastal. Meanwhile, the other day she came home from a short trip to the grocery store and found that the elevator by her unit wasn't working. A 30 second walk to the other elevator would have been the solution, but instead she called me to have my husband come down and get her, because she couldn't "walk that far" with 2 (very small light) bags. But she's going to take care of a boat now???

She also seems to forget WHY she moved here and I am SICK of the complaints because she misses her old area. It's like she is acting like I somehow tricked her into moving here and it's my fault. That is so far from the truth. The LAST thing on earth I ever wanted was for her to move here! Plus my husband and I put in a TON of money and work all summer long before she got here last fall. Where is the appreciation??

I'm venting because this morning she wanted me to tally "all the money we invested" into her condo and let her know what it is, telling me she needs it for her taxes (not true). This is coming after a weekend where she spent every day at our place, eating her meals here that I cooked, but complained constantly about being bored and lonely. WTF am I supposed to do??? I've already tried to help her meet people and she just doesn't take any initiatives at all. Refuses to go to the local senior center, like that is somehow beneath her. I'm just so sick of it. I suspect she wants to know how much we invested because she is having thoughts of wanting to sell and move back to her old place. That could never happen. She doesn't realize it was her best friend at her old place who first used the word DEMENTIA to me, and has told me numerous times that even though she misses my mom, she is "where she needs to be". The only other move she will be making in her life will be to a care facility. It's like she's oblivious to the fact that neither of my two siblings and none of her friends want to deal with the burden that she has become. I'm the only one who stepped up, along with my husband, but nothing I do will ever make this woman happy.

Piper, I don't know if knowing that this condition has a name and that it is fairly common in Dementia patients helps at all.

What may help is learning specific techniques to deal with it. You can contact the Alzheimer's Association, NAMI, and watch Teepa Snow videos.

You can see a counselor. You can come here and vent and scream.

Hopefully, others will be along with some more concrete suggestions....
Helpful Answer (4)
Reply to BarbBrooklyn
ExhaustedPiper Mar 12, 2019
That was interesting to read Barb, thank you. I never heard of it, but that could be the case with my mom. I also appreciate the suggestions. I've seen the you-tube videos by Teepa Snow mentioned before so I am going to check them out.

I am getting therapy for myself. My next appointment is April 2nd. It helps. Mostly I just have to accept that all of this is happening, it's not going to get better, and I need to start reacting to it better. Apparently I am still struggling to accept that this is all happening.

Like the tally of money spent that my mom requested. While we were doing the work and spending I kept every receipt and logged every expense in a notebook. I copied the expense pages for her. There were five full pages of expenses. She looked shocked when she saw it. Nothing like doing a sh*t ton of work, for months, and putting yourself at financial risk to move a person, only to have them forget what you did.
Fun with anosognosia, a lot of us know all about that only too well...
I can hear your frustration, but know that you'll get nowhere with her.
My dad is about 8 years into Alzheimer's, and it was bad enough early on to see him slipping, and hear him saying to himself or to the cats "I'm so confused, I don't know what the hell I'm doing...' That absolutely broke my heart, that he was failing and knew it. He was an electrical engineer and master mechanic, and now he cannot complete the simplest tasks.

But then fast forward just a little bit, and then it was "What the hell are you doing? What did you do to my (insert thing he himself just ruined/broke here)?" I had caught him smashing another $85 Braun self-cleaning shaver in the bathroom sink, and tried to stop him, but there's the broken thing in his hand, and there he is, cussing me out and telling me "YOU just did it!!!" (You will think that surely, you're going to completely lose it and crack up the first time this kind of thing happens. You can even try to tell your friends all about what you're dealing with- if they have no first hand experience with hard-core dementia, they might not even believe you at first!)

Dad is completely disconnected from reality. His short-term recollection, even for things he has physically just done himself not more than 10 seconds ago, is completely obliterated. Yet, the worse he gets, the more he believes he's on top of his game. He lives with myself and a cousin, but he will tell his aide every day that he lives alone, he says goes to the grocery every day, always asks her if she'd be needing a ride home (he doesn't have a car or drive anymore), he doesn't even know he has children, let alone that one lives with him, and thinks he takes care of his finances, and everything else, when it's the other way around.
Or better, from a man who never swore on a regular basis, and was the best-natured, most easygoing guy- "Get the F*@k away from me. I know what I'm doing. There's nothing wrong with me, you stupid Bi#ch. Get out of my house! You're the one with problems." And he's saying this as he's trying to call my aunt with the TV remote, and I'm trying to give him a hand. He doesn't know what Alzheimer's is anymore, much less that he has it. He bought a LTC policy years and years ago because the thought of becoming a burden on his girls or being in a nursing home was too much for him, and now cannot grasp the fact that the more difficult he acts at home because of his delusions of being normal, the closer he is pushing himself toward the very thing he wanted to avoid, and is acting like the burden he didn't want to become. And this simple logic just can't be used with them, it's meaningless. To them, THEY'RE normal, and YOU'RE cheating them, lying to them, stealing from them, breaking and hiding their things, not FEEDING them! Yes, Dad has no real feelings of hunger or satiety anymore, so couple that with the complete loss of short-term and you've got a guy telling his daughter that just gave him a big dinner that he ate every bite of that she's mean and won't feed him. Or that you're "gaslighting" them, trying to make them think they're crazy!

The neurologist told me about anosognosia years ago, as something so common to pretty much expect, and that it was one of the most frustrating things to deal with. "Steel yourself- the worse he gets, the better he'll think he is!! He'll accuse you of everything under the sun, you must not let it get to you. You know, and your family knows the truth. Whatever the truth is, he's either not going to believe it or will just forget anyway. He is very lucky to have such a daughter to take care of him, whether he realizes it or not."
So that's what you have to hang on to- you're doing your best, it will not be appreciated, and you'll feel sick of it A lot. I am still trying different tactics to deal with the frustration myself.
It is so VERY frustrating, so vent away!
Helpful Answer (3)
Reply to LTNY71
JoAnn29 Mar 11, 2019
Don't you think Dad needs to be in a facility. Could he not become violent?
See 1 more reply
It really is frustrating and exhausting to have to deal with certain aspects of dementia. I think that many people think that it's when a person forgets certain information, can't keep up with keys, purse, etc., but, they do not realize that it's much more than that. It's when the LO insist on information that is not true, repeats the same thing over and over, resists care, uses poor judgment and has magical thinking. My LO who needed help with ALL of her ADLs, was certain that she could live alone, as long as her neighbors looked in her a couple of times a day!!! In my case, the comments and magical thinking eventually stopped, as she progressed.
Helpful Answer (2)
Reply to Sunnygirl1
ExhaustedPiper Mar 12, 2019
Thanks Sunny. I can tell you that I myself did not know all these different aspects to dementia until I had to deal with it 24/7. It's much more than I ever realized.
We've been making out all right for now, he's safe, has constant supervision from me, aides while I'm at work, and my cousin also helps out. My sister dumped this all on me, she's checked out. Won't even visit.
We're managing. Dad is deluded about everything, but is calm for the most part. The aides and myself keep him as well entertained as we can. He saves his worst behavior for me; the aides tend to be better than I am at redirecting him as necessary when agitation or sundowning kicks in, and his neurologist started him on a low dose of seroquel in the later afternoon, which has been helping a bit.

I sometimes feel guilty when I do vent here- as heartbreaking and awful and frustrating as dealing with this can be, there are lots of folks out here in even more dire circumstances. I at least have aides and a cousin as support (and the biggest piece of this puzzle is that Dad has LTC), but there are many being crushed by the weight of trying to do this with less/ no help, physically or financially. My heart goes out to all, and I count my blessings and try hard to practice gratitude every day.

But I'm under no illusions that he will not have to go to a facility at some point. I want to honor Dad's wish to age in place as much as I can for as long as it's possible. He's raised his hands a very few times, directed only at me, but I think, in retrospect, it was my own poor handling of the situations that caused the escalation- I've since started practicing better techniques and have not had things get out of hand like that for a while. But it weighs heavily on me. I know we'll get to the point of having to place him. He still ambulates very well, is in very good condition physically, is able to toilet himself, is not yet incontinent and has no serious eating troubles- YET. But he sometimes takes bites that are too big, or he doesn't fully chew- I've had to do the heimlich on him twice in the last 7 years. I don't think it's a swallowing issue, we try to keep an eye on how much he's cutting things up, and tell him to take his time, chew more and not rush, but I fear this, and swallowing, becoming a problem as he declines.
I have a feeling that when/if wandering becomes a serious issue at night, that will be what pushes the situation. He doesn't wander very much now, we try to keep him entertained so he doesn't "fixate" on things he thinks he needs to do elsewhere in the house, and he sleeps through the night except for bathroom breaks, which he also has supervision for. I have been sleeping on an air mattress in the room next to his at night since an overnight fall a year ago; I have a motion sensor next to his bed that sounds a remote alarm box I keep with me, and can get to him as soon as he stands up. I did major detective work, removed anything I thought he could possibly stumble on, and he hasn't fallen since, so that's great, but he will again at some point.
But we're under as much control as possible. For now.

So that's my really, really long answer to your short query! I hope you're not sorry you asked!
Helpful Answer (1)
Reply to LTNY71
ExhaustedPiper Mar 12, 2019
No I am not sorry at all, I loved reading your whole response. IMO you are doing an excellent job with your dad! You will never have to live with regrets because of all your loving dedication. I also imagine that he was a great father too. Just the idea that he got the LTC insurance shows he did not want to be a burden. A very unselfish parent. I think that really factors into the whole caring dynamic.

I'm glad you have support from your cousin and the aids. You also seem prepared for the future and just taking it day by day. I'm going to follow your journey through your posts and keep learning from you, because you seem very wise to me.

Thanks for sharing.
I think you are doing a good job. Indeed, your mom likely does not realize the burden she has become to you. She also does not realize she cannot take care of a boat or move to another place. It is all part of her disease and decline in brain function that is part of it. Some narc traits may linger, but I have noticed with my mom that she cannot realize when she has gone overboard anymore and cannot adjust her behavior in a more pleasing manner anymore. This is so hard, but I think you are doing many good things.
Helpful Answer (1)
Reply to GingerMay

Ask a Question

Subscribe to
Our Newsletter