Perceived reality

AddyJ89

My mom is having a day where her perceived reality is running wild. She believes that she will be going to go get food with another person. However, we do not have a car and she has had no contact with other people since she lost her phone at least a week ago. I haven't been able to replace it yet. She has asked me to go with her about 6-7 times today and each time that I say no, she either gets mad or starts crying. I recognize that this is because to her, it looks like I just don't want to do the thing with her. However, I can't. There's no way for me to live in her reality. I can do my best to placate and not challenge that reality, but it's not enough. She is confused and when I say that I do not want to go anywhere, that I am not hungry, or even when I ask who the person is she's going to eat with, it reminds her of that confusion and she gets overwhelmed, which comes out as either anger or crying. I don't know how to help her outside of just leaving her alone and she won't let me do that.

topgumm

Hi Addyj89, I'm sorry about the anguish your Mom's request and altered reality is causing you. I totally understand that you cannot live in your Mom's reality. Frankly, It's impossible and we know it, but your Mom is in a different place; not a place of logic or complete grasp of her situation. I might not have the right answer for you, but it may be possible to appeal to your Mom in a way that you don't directly deny her but also don't submit to the sublime. Do you think she might respond more positively (or less negatively) if you suggest that you are sorry you can't go with her and meet up with her friend today, but that you feel so lucky that she gets to stay close to you so that you can enjoy her company and so that you won't have to miss her like you would if she was gone? Just a thought.

mabelgirl

I get we can not fully submit to their reality caused by this disease. We can however use the effect of the disease to make ours and their life better. You know she’s not going anywhere or meeting anyone but she does not. Couldn’t you simply use fiblets like “we’ll go to the after I do such and such” or “yeah your friend called and to cancel”? Questioning her or calling her out her shortcomings is sure to upset her and cause you anguish.
Prayers for patience.

dancsfo

I realize this is very difficult, and this is a stretch but perhaps you can agree that you want to go, but later. And hope that she forgets when "later" comes, and if asked again, you repeat the answer with "tomorrow", and repeat as needed. I hope this avoids the confrontation.

The crying and anger is hard to deal with, since one feels helpless.

M1

Addy if she's persistently agitated, I'd talk to her docs about medication to calm her down. Redirecting strategies can only do so much.

AddyJ89

https://alzconnected.org/discussion/comment/222546#Comment_222546

I will give that a try the next time this happens. She is convinced she is getting married next month so I have a feeling it will happen again. Thank you <3

AddyJ89

https://alzconnected.org/discussion/comment/222553#Comment_222553

I've actually tried the so and so wants you to do this before and it did not work. I don't know that it will work for this. But the "we can go after" works for a little while. We have her guardianship hearing tomorrow and she went to bed tonight thinking that we will be going to the restaurant she believes we are supposed to go to after the hearing. I am hoping that she wakes up and does not remember this plan, but if she does, I can try to push it off for as long as I can. Thank you! <3

AddyJ89

I actually got the "tomorrow" and "after we talk to the doctor" to work when she was in the hospital in July. She was meant to be going to a nursing home at that point but since she still had agency over herself, the nursing home sent her home because she didn't want to stay. Hopefully her guardianship hearing goes well tomorrow. I am worried that she's going to say no to me being her guardian because she's mad that I wouldn't go on the trip with her today. I'm really hoping that she does forget today. Because today, she wouldn't even let me fill out her disability papers because she was mad at me since from her perspective, I wasn't doing as she asked.
Thank you <3

M1

Good luck with the hearing and let us know how it goes.

AddyJ89

This has been the first time she's been agitated for an entire day. Previously, she was mad that I had her keys. Once I gave them to her, she was placated. She crashed her car back in June, so I don't have to worry about her having the keys. She does not understand that she cannot drive anymore. But her being upset about that lasted about 2 hours. She gets upset when I don't agree with her reality, which I try to do as much as I can but sometimes she catches me off guard and my stress level jumps from a baseline of 150% to 200%. I am less able to agree with her reality when I am already stressed.

That being said, I really do need to get her to a doctor. Her sleep schedule is pretty thrown off, so she would benefit from some sleeping aid.

AddyJ89

As an update, our guardianship hearing went well. I was appointed legal guardian of my mom. I just have 2 forms to file to make it official but this is a huge weight off my chest because now I can actually advocate for her when she's not able to advocate for herself.

M1

Very good news. You'll have some tough decisions to make, but at least now you have the authority. Remember that safety has to drive the decisions, you are making decisions for her, not to her.

AddyJ89

It's a little funny/odd. The day that I am awarded guardianship (the case is still being finalized, so not official just yet), she starts wandering again. Yesterday, she was out for 6 hours without me or my roommate knowing where she was or having any way of getting ahold of her. She lost her phone 2 weeks ago and I haven't had the funds to replace it. I have since ordered her a government phone which should be here next week. She ended up walking about a quarter of a mile up the road to where they were having an old car show.

Today, she's been sitting on the steps of a neighboring apartment building for 5 hours. I know it's because she's not used to being stuck at home. She was always on the go. But until we get a car, she's stuck here with us and her mind is not allowing her to stay in one place. She keeps imagining that someone is taking her car and leaving it at a park. She also imagined that her "husband" (not a real person) lives in the apartment complex that she's been sitting outside of today and has been waiting outside for him all day. She tried to enter apartments, which led to someone in that building calling the cops on her for the second time today (first was just for her sitting on the steps).

I don't know how to keep her inside or persuade her to sit on our steps instead. She's very strong willed and is not going to do anything she does not want to do. It's going to be a fight when the time comes for her to be placed in a home. Unfortunately, that time is coming sooner rather than later if she keeps wandering like this. It's going to become dangerous real quick. I called the police yesterday because she had been missing for 6 hours. She returned home while they were writing the missing persons report.

For now, she still remembers where she lives. That's not going to always be the case.

AddyJ89

https://alzconnected.org/discussion/comment/222862#Comment_222862

I haven't checked back in in a while but the update is that there was an APS case started, probably something the police had to get rolling since she was brought home twice and called about at least I think 6 or 7 times over a few days? I'm not sure. My mom has been placed in a nursing home since Sept 23rd. They are very nice and dedicated to her care. The APS case was just closed today because she will be with the home long-term.

As was pointed out, I cannot keep her safe at home, so this was the best option for her safety. Of course, she is not happy and continuously tells the nursing home staff that her family is coming to pick her up and refuses to engage in activities there. I struggle with the guilt of not being able to care of her myself. However, I know that she is in the best place she can be right now.