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ExhaustedPiper Asked April 2019

Are people with dementia capable of understanding boundaries?

Two ridiculous things happened today. First, my mom managed to get to the plastic surgeon today for the consult she arranged. I had hoped she forgot about the eye work she doesn’t need. It’s insane. I don’t know the details yet but I think (hope) she was turned down. Just knowing she went (I tracked her phone) had me so irritated.


Then when she got back back she left her condo to drop some garbage and locked herself out so she came banging on my door. I was just about to serve dinner for me and my husband. My dogs go off, I’m trying to quiet them and she remarks the food smelled good and she is going to have some. I tell her she can take a plate home and go to get my keys for her place. She makes a plate and then huffs at me “I guess I’ll go since I’m not welcome here”.... I gave her a “whatever” and walked over to her place and unlocked the door.


Am I being unreasonable? Unless she is having a problem I don’t want to be interrupted at any time with expectations she can hang out. I want a plan for visiting.


This is so frustrating.

NYDaughterInLaw Apr 2019
The way that I see it, you moved your mother in next door to you. That was a good move for several reasons including that she is not living in your space and it's easier for you to keep an eye on her. All good things when you are the caregiver.

I am a big proponent of whatever is convenient for the caregiver because, like it or not, caregivers are usually younger and have more things to do each day on top of caregiving.

You are not responsible for your mother's happiness. You are not responsible for your mother's contentment. You are not responsible for living your mother's life. You are her daughter. You are not her nurse. You are not her teacher. You are not her safety net. You are one person whose own life matters.

If anyone needs to learn to set boundaries it's you because of your childhood and the damage your mother did to your relationship. Your mother is responsible for that damage. And there's nothing to undo it. No amount of caregiving is going to satisfy your mother. Accept that.

Also accept that you have nothing to feel guilty about.

You and your marriage come first. Your mother will never accept that regardless of how many times you say it. The more you try to explain yourself to her, the more explanations she will want. You will never get to quit explaining yourself to your mother even though you are an adult.

Your boundaries are yours. That she has dementia does not entitle her to violate them. She will try but your boundaries are there to protect you and your marriage. Enforce them. Boundaries are not cruel. Boundaries are necessary for survival especially when you are dealing with a parent who damaged you as a child.

And please don't let a few people on this forum who believe in "boundless compassion" or "duty until death" or whatever nonsense, deter you from establishing and enforcing boundaries with your mother. Recognize that they may be miserable in their current situations and just want company!
NeedHelpWithMom Apr 2019
NY,

What a great response!
golden23 Apr 2019
The thing about boundaries is that they are not to change anyone else, but to protect you by setting limits, then consequences if the limits are not observed.

No you are not being unreasonable by protecting your private time. The consequence for interrupting you is that she does not get to stay for a visit.

Maybe in response to “I guess I’ll go since I’m not welcome here”.. you could restate the boundaries "Mom, you are welcome when you and I can work out a time than suits both of us. "

Re the cosmetic surgery - her problem, You have stated that you will not be involved - end of story. Try not to let it get to you. You can't control her, only yourself. People are allowed to make foolish decisions.
kdcm1011 Apr 2019
Such good advice; and it can be used in all sorts of circumstances. I am definitely keeping a screen shot of this to refer back to!

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OneDay Apr 2019
I think the issue of boundaries depends entirely on the person. If they were good about observing boundaries before dementia set in, then they will keep that ability, at least for awhile. Those tend to be the elders who don't ask for help, don't call when they need something and generally don't want to bother anyone because they have a strong sense of boundaries. Those elders who were terrible at observing boundaries will be equally terrible at boundaries with dementia. With my mother, we worked on setting boundaries for years. Interestingly she struggled with setting boundaries for her mother. Then I struggled with setting boundaries for her.

But once the dementia really gets going and they live with delusions and anxiety and other symptoms, then there is no way they are going to be able to understand boundaries. It's very much like expecting a newborn to understand boundaries. They are struggling so much internally that they can't express that the concept of boundaries is simply too much, too abstract and too complicated.

So, my once sweet and thoughtful mother will now wake me up at 2 am to ask if she should divorce my late father because he's not coming home anymore. It's heartbreaking to be honest. She and my dad were in love and rarely apart, and especially happy the last 20 years together. She misses him so much. The way her dementia is working is that the people she misses the most, she simply no longer accepts/remembers/believes they are dead. But she is so alert that she has to construct an explanation for their absence.

I guess this and fecal incontinence are among the reasons that people do not take care of their own parents when they have dementia/Alzheimer's/brain issues.

If your mother has always ignored all boundaries, then you're in for a hard time as that is unlikely to change. If your mother used to respect boundaries, and is losing that ability, then it will probably continue to degenerate. I do think it is ok to tell her calmly how you feel and what you expect. For instance, if my mom wakes me up at night to talk about how to find her late mother, then I tell her I will talk to her in the morning, and please do not wake me again. She is able to follow this instruction. I may hear her rustling about her room, but she is still with it enough that she is safe left to her own devices at night. She can turn on the TV , well sometimes she can. She has an Alexa device that she can ask questions to. And she spends hours calling 411 information and asking for the phone number of her mother. Since 411 does not charge for land line inquiries, then I don't care at all that she is calling them. They're not at all helpful. They're overseas. They don't listen. But they keep her busy.

What I don't really get is people expecting dementia patients to be normal people. Their brain is literally shrinking and disintegrating and losing connections every minute. They are lost in a fog of anxiety and confusion. They cannot make sense of people they love being gone. The only thing that they do not lose is emotions. They respond to affection. They feel quite a bit of anxiety. At some point the only impact anyone is able to have on an elder with dementia is to either make them feel safer and loved or to make them feel anxious, lost and rejected. It really gets that simple. It becomes the same as an infant. We don't reason with infants. We simply soothe them, or sadly upset them.
AT1234 Apr 2019
When i read the part about expecting them to act like normal people, it made me wonder something. My mom has very early stages apparently, because she’s very convincing that she does not have dementia. It’s confusing if you’re dealing with her or the dementia. Boundaries? Yeah no that’s offensive to her to be told no.
Daughterof1930 Apr 2019
The boundaries are yours, not hers. So it doesn’t matter if they work for people with dementia. For the plastic surgeon appt you maintained your boundary as you didn’t participate in taking her, good job! You also maintained your boundary for dinner in fixing her plate to go. Joann has a good thought, maybe mom just wanted to eat and have the company, but you equally also know your mom and how far she might push this, and you’re also right to value your family time. I see your boundaries working
ExhaustedPiper Apr 2019
The reason I didn't participate in taking her to the plastic surgeon is because I didn't know she did it until after the fact. She told me earlier she was going to the store and when it was taking hours I tracked her to see where she was and I saw her at the plastic surgery office. When she got back and came over I asked what took so long at the store and she said "oh I also went to that appointment for my eyes", I said how did that go and she said in a not so good tone- "Oh I'll tell ya later". So she didn't seem happy with the appointment so I'm thinking the doctor was ethical and realized what she was wanting was just ridiculous. My mom had her eyes done about 16 years ago. They still look very good. This desire to do it again is crazy.

I also understand my mom's need for company, but I can not give her as much as she wants. I already feel over-extended. My husband has been a saint in this but I can tell he's getting sick of it too. I resent that she won't even try to help herself, like going to the senior center to meet potential friends or just be around other people.
Davina Apr 2019
You are being reasonable. You said she's been disrespecting your boundaries all of your life so this probably isn't due to dementia.

Without some sort of schedule your life is in her hands. You could have her over for dinner a certain day each week, which would give her something to look forward to. Eating alone the other days isn't going to kill her, and maybe she'll find new company. If she barges in unannounced you can politely turn her away until the next scheduled get together.

It 's good that you're protecting your time with your husband and not ignoring him in favor of your mother like some do.
NYDaughterInLaw Apr 2019
I agree completely!
surprise Apr 2019
Good job for not being guilted into inviting her for dinner! How is she to know that you and spouse were not having some romantic one on one chit chat?

What if you dropped a note to the plastic surgeon's office including the particulars of your mother (DOB, name, address), and just said that she has told other doctors in the past that she has help at home of you, and that you are absolutely not helping with any surgical or medical needs. That you keep your help limited to keeping her spare key. That will make you feel better and will likely be put in mom's file.
ExhaustedPiper Apr 2019
Exactly, she didn't care that we might be busy having couple time, her own desires are the only things that she thinks of, and this is nothing new.

And you know what, I wasn't pissed she locked herself out, again, and needed help. I would not have been pissed if she asked for a plate to take home either. My reaction came when she felt entitled to interrupt us with zero thought to what we had going on, and then the mean dig. The dig is what really threw me and in fact ruined my entire night. She said it that "tone" that has cringed me my entire life.

On the plastic surgeon I don't think it's going to happen, I think they turned her down, because nothing needs done! But if she would have managed to convince them, I wasn't going to take her. A person needs to have a designated driver after surgery and I was planning to say no.
I'm at a loss as to why she is even trying to do this. I even wondered if she could possibly be seeking ways to get pain meds. She sees a pain management doctor (another appointment she managed to make and keep herself with no assistance from me). She takes Vicodin for "back pain" but MRI shows nothing that should be causing that kind of pain, so she blames it on "my meds". "My balance" - This was actually an issue I brought up with the neurologist. I said in my letter she has a pain management doctor for pain that I can not explain.

I'm rambling, sorry.
Babs75 Apr 2019
Boundaries, boundaries, boundaries. That's the one thing my counselor enforces with me every visit. I will not be guilted into doing something for my dad that I don't want to. He used to be so respectful of my time but as his disease has progressed, he demands more and more of me, much of it he can still do himself. Give him an inch, he'll take a foot. You did the right thing.
ExhaustedPiper Apr 2019
Thanks. She already has my husband set up for (yet another) task today. She purchased a chair with the full assumption he would take it to a shop 45 mins away to have the legs adjusted to match her other chairs. A new chair she did NOT need BTW. He agreed to it, so that will be happening today. (not sure why I threw that in I guess just to give some context that my mom is FAR from ignored) but I'm not going to call her myself. I'm going to wait until she calls me, and if she is still pissy with me I will hang up. If she is reasonable then I will calmly tell her I didn't appreciate or deserve the comment, and I want to make dinner plans with her I just want us to plan them so I also have time for just me and Tom (the husband).

Wish me luck.
IsntEasy Apr 2019
It’s you who feels the need for boundaries, not mom, so you must set them.

Keep in in mind that her behavior doesn’t bother her, it bothers you. That will help you come up with ways to set boundaries you can live with.

debbye Apr 2019
OK, I am in the minority here, but I am speaking from experience. You can set all the boundaries you want. Your mother is going to do exactly what she wants to do. She doesn't understand your need for couple time. It is likely she has reached the stage where there is one person in her life: her. It's not that she doesn't care about you on some emotional level, but all she is thinking about is what she wants to do. I live with my 88-year-old mother with dementia and she only thinks about herself. I know she can't help it, and it is hard to deal with, BUT it's the reality of this disease.

I hate when people tell me to consider putting mom in a facility, but if you can't handle her demands, maybe it's time to consider a different arrangement.

Toadhall Apr 2019
You have the absolute right to control who comes into your home and when. This applies even to your mother. Later in the course of dementia, the person does not understand boundaries. Based on what you write, she is not there yet. This is a situation where you can set boundaries. I mentioned before about an elder who would grab my breast when I was doing up her seat belt. In that case, boundaries are no longer recognized by the person. In your case, you need to set clear boundaries and enforce them. The enforcing part is most important. If you give in just once, it is a big setback for you. In the case of the keys, stand at the door, leave her outside, request husband get the keys. Keep her outside, physically block her from entering if necessary or close the door, unlock her door and return home. Ignore any talk about your dinner. If I came to your door, invited myself in and started eating your dinner, would you allow that? (if so, what's your address?) I've recommended before that a person needs to think about their response ahead of time in boundary situations.
As for the plastic surgery, it is not you business to stop her however poor the choices. You can advise, but she appears to be competent. Are you crossing a boundary trying to stop her? I think yes.
Regarding your post later about her getting your husband to do something about a chair. When you enforce boundaries, she will turn to violating his boundaries. You two should get on the same page withbthis.

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