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I wonder if you can work out some major moves of furniture and room use. Is it possible to put a table for M just outside the kitchen so that she can see you but not be so in the way? Could you put a large mirror that reflects you so she can see you from where she is sitting? You can turn and wave as well - reflections work two ways. If you are committed to this, is there a non-load-bearing wall that could be removed to make a bigger space connected to the kitchen? If M is not using the big den room during the day, could you screen off her bed across a corner, and turn the rest of the den room back into a family space for the daytime?

You now have a better idea of how M wants to use space. Your first good try hasn’t really worked, so think again. It may not look so great (not so much like a separate bed-sit), but it might work OK for all of you. Worth thinking about?
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LOL Oh well
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lealonnie1 Jan 2022
Fabulous comment, as usual, including LOLing at the OPs expense.
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Lulu, your problem is that you and your ancestral family are on the same page with mom: Ie you should care for her. However, your whole immediate family is not on board with this even though the dementia is not that bad to you. Yet here you have your mister and your minor children hiding away in their rooms because they're resentful and because they want you to be with them as opposed to her all the time.

You're outnumbered five to one by your current family. Maybe that is because they fear that as her ADLs become less doable, you (and potentially they) will be expected to do her bathing and toileting for example. Or how about when she starts wandering or sundowning? You should tell your family right now when it's gonna be enough for you, and try to get them on board with being on board with this.
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In my opinion, setting boundaries with a person diagnosed with mild dementia is not a possibility. There is nothing wrong with you wanting to have boundaries. They just are not possible in your situation and your mother's health. Best take care of this soon before you and mom become permanent with no one else.

Of course your mom loves her situation. Of course your husband and children are upset. Part of the question comes down to priorities.

1. Who are you emotionally married to? Your husband or you mom?

2. Who are you the emotional mom for? Your children or your mom?

You are not your mom's substitute emotional spouse. You are not your mom's substitute emotional mom.

Some women think and feel that they are, but unless they change often end up divorced and childless. Get some therapy also to help you deal with this and move mom where she needs to be. That has nothing to do with you not meeting her needs. You are doing that, but your own family needs plus your own are not being met. I can perceive from experience, there is a deep emotional bond here that is having an unhealthy impact upon the marriage and the children plus you.
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Luluhalls Jan 2022
After much thought…she is going to AL next year. My brother and I agreed it’s for the best…but not to put her in right now as to not uproot her twice. We are building a new home 3 hours away. She is on a waitlist at an amazing place where we are moving to:)
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My mother was a SEVERE diagnosed agoraphobic, who went for YEARS without leaving her home, broke her hip at 89, and became totally dependent on my (her only child’s) care.

Even knowing as I did, that she wouldn’t EVER want to live with me, I moved her in, with her 2 doting teenaged grandsons, and lived in Hell for 9 months, u til we placed her in a very near by residence where she lived for 5 1/2 joyful years, in everyone else’s business, at community sing alongs, picnics and parties, and having all of her needs and comforts provided for her.

Promises that cannot be fulfilled SHOULD NEVER BE MADE, nor should there be any expectations EVER that such promises be kept. For you to promise YOURSELF that she will live safely and in comfort, no matter where that turns out to be IS MEETING YOUR RESPONSIBILITY TO HER.

Circumstances change, people change, life changes around us. You are doing right by her, whether in your home, community supported retirement quarters, or in the future, the best AL you can find, near enough to visit often.
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Luluhalls Jan 2022
my brother and I made decision to put her in a waitlist at an AL near where my dh and I are building our new home (3 hours away). It’ll be about 15 months from now….but a plan is in place!
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I skimmed your past posts. So you gave up a job that you wish you still had to take care of your mother. Things have become difficult in your house since she moved in.

What is her financial situation? You wrote that she would need quite a bit of assistance in Assisted Living.

Something's got to change, right? Why can't she go to AL? So what if she runs through her money? What else is it for?

And there is this: "I have one brother and he is unwilling to take her in or help more than a few weeks a year."

So because he doesn't want to help, you have to do more? I read where your mother doesn't like for you to go out AT ALL without taking her. Why can't you set similar boundaries as your brother did?
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Luluhalls Jan 2022
My brother lives in another state with his wife that has told him point blank she’d divorce him if my mom spent more time there. I cannot change their minds. My brother is ok with me finding an AL or memory care facility for her to live in. His job has been the financial affairs of both my parents. My mom has plenty of money….but the more you have, the more they want to take (she would not qualify for any type of medicaid). Until my mom needs actual “nursing” care, I can’t justify her spending the hard earned money my father earned just because my mother annoys me. My father specifically stated that he did not want his money to go to a nursing home unless we could help it . If my mother was in a situation where she needed a different type of care, I would seek that care no matter the cost. I want to be clear that I am not avoiding giving my mother the necessary care… I give her that and then some! I’m just looking to understand how I can approach my mother and or set boundaries in a way that does not upset her and can help my family to want to come downstairs. I’n not at the point (just yet) that I’m ready to have my mom go elsewhere. My grandfather was abused in a memory care facility…and I am leery.

My mom is not a social person (except with her immediate family) surprisingly and her only joy in life are WORDsearch puzzles. she could have 100 people in the room and she would still be doing her word search puzzles. Placing my mom in a different setting is not going to change what she is doing. Just to put it into perspective… when my father was being wheeled out of the house on a gurney my mother was doing her word search puzzles.
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I understand your frustration -- I really do -- but I also wonder why you allow your kids to not come down for dinner to eat as a family, and whether you'd tell them to leave you alone to cook if they came in for a snack.

In short, yes, you're being kind of mean. Is she part of the family or not?

This was obviously not a family decision and was made for the wrong reasons (Dad's request when he had no skin in the game), so yes, something needs to change, but putting the onus for that change on Mom who has dementia is unrealistic. Expecting her to spend all her time in a single room (sorry, that's not an "apartment") is also not fair.

Look into an assisted living situation for her preferably where there's a Memory Care option for when her dementia worsens. Until then, make your kids be more civil to their grandmother and spend more time downstairs. They need to develop empathy rather than resentment, and they also need to act like they're part of a family.
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Luluhalls Jan 2022
I don’t think you really do understand…..because if you did, you would understand it’s not as simple as just learning to live with it and be more compassionate, etc. I’m a very good daughter and I do so much for my mom. I am simply asking for some space a few times a day. She is not bound to her room nor would I ever expect that! I can guarantee that she would prefer spending some added time in her bedroom than go live in a nursing or memory care facility. That is my last option for her until I can no longer properly care for her. My kids do get snacks (in and out)……not 50 questions. There’s a big difference between your kids and your mother. I’m just asking how to set those boundaries. I don’t think this I had to be an all or nothing answer.
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I bet in her own home she used her kitchen table to "spread out on". Your Mom may not be able to change this routine. It's ingrained.

I am so with you about people in my kitchen. My kitchen is small, too. Two people in there means bumping into each other. My kitchen is my domain. My MIL used to stay her about 1x a year. I came home from work to find her cutting out dough on my kitchen counter. No board under it. My DH has never seen me cutting anything without a board. I told her this and she said "I do this at home all the time" me "but you don't have a cat."

Hopefully Mom can still be redirected. As soon as she starts setting up her stuff say "no Mom, not today". Then gather it all up, walk to her room and place the stuff on her table. Then say "this is "your" kitchen table we brought here so you can have "your" own table to do "your" puzzles on. The other table is mine." You may have to repeat this every day until she "gets" it.

Think of Mom like a small child. They too are self-centered. They too think your mean when u don't allow them to do what they want. Its part of the Dementia. They have lost the ability to reason, show empathy and its all about them. Their world becomes very small.

If Mom has money, use it to find her an AL or MC. My Mom was in a small one and it was nice. Make sure you take her table. The AL will try to involve her in activities, ect. But they will not force her. So she stays in her room all day instead of your kitchen. Your husband needs his home back. Your children need their home back. An Al/MC is not a jail. Long story, I placed Mom and she had more freedom there than at my house. They had entertainment come in and she loved it. Parties of some sort all the time.

For your kids to stay in their bedrooms all the time and your husband feels the need to stay out as long as possible, is it fair to them to need to give up the freedom of their home for one person. I really think you may be sugar coating this. Your family has no interaction with Mom. There is a reason for this. Is she really worse than you are saying.
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Luluhalls Jan 2022
Sugarcoating? Not quite sure why you would say I don’t talk to her at all! We all interact with my mom throughout the day. I answer the same questions over and over. My mom has mild Alz/dementia. She is able to care for herself physically, but her short term memory is terrible. I sit at the table with her for dinner and I take her on 3-4 good outings per week. I try so hard to have actual conversations or small talk with her……but she just wants to talk about the temperature outside or ask where we are going (forgetting she’s asked me that 10 times all day). It’s very sad….but I do try. My grandfather was abused at MC so I’m leery of it until I can’t take care of her needs. Her needs are being met perfectly……it’s the rest of ours that are not. That is why I am reaching out to see if asking her to spend time at “her” table is fair? I just needed reassurance that trying to change her habit is something I should be doing.
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@gladimhere

Mom moved in with us at my Dad’s request because it was both of their wishes to live with family. My mom’s father who had ALZ was physically abused in a memory care facility. She is not in need of nursing care yet. She could be independent cooking but it would be microwave only if left up to her. In other words…..other than her being in our personal space all the time, she does not seem bad enough to warrant a $6-10k per month AL place draining all her money.

She gets very upset when I even mention an alternate living arrangement. The same kids of mine who stay in their rooms all day think it would be mean to make mom live on her own. My mom is anti-social and if she went to a facility, she would just sit by herself at a table doing word searches anyways.
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Trish1750 Jan 2022
what about adult daycare?It would give you and the family time together and maybe feel more at ease interacting as a family.
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The issue of Mom being in your space all day may be considered a type of 'shadowing' behaviour. Maybe. Or could be just loneliness.

Shadowing is when people with dementia get anxious alone & want to see & be with others so follow them around all day. Also they lose ability to self start or continue tasks on their own.

Hence day-rooms in aged care homes for people to sit together & organised activities.

So. Mom has social needs where she wants company all day... but this interferes with family life of the other people in the home, especially you.

What to do?

I think a NEW arrangement is needed. But first, look at your expectation that Mom stay in her own area. If she doesn't like it, she just won't do it!
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Why did she move in with you rather than a senior care facility? Because dad requested you care for her? Caring for her is also making sure she lives somewhere that provides the services and level of care she needs.
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Luluhalls Jan 2022
I am meeting “her” needs just fine. She loves living with me and eating my meals and seeing us all everyday, It’s “my family” (outside of Mom) that is feeling like we have no time to ourselves without her in the room. MC or AL might be great for someone who’s needs are not being met. If you ask her if she want to go to AL she practically has a fit! She says she loves being with us…so I can’t justify sending her away just because I feel overwhelmed at times.
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Is there somewhere she can be to be around the family yet not be taking up residence in the kitchen?? You definitely need access to your own kitchen!

My mom lives with me and has mild dementia (probably close to moderate) and it's a daily challenge.

That's too bad that she doesn't spend any time in her nice big bedroom! What a waste of space. Can you rearrange to put her in the small room and then have access to your den again? Maybe you had to do a lot to make that happen, making it not workable anymore.

Sounds like maybe it's time for something like a family meeting. You hubby and mom. I'm not saying this would be easy, but neither is the way things are currently going. Could tell her something like mom you've been here X months now and we'd like to talk about what's going on and what's working well and not working so well.

Could you spend some time with her in her room to help get her more comfortable with hanging out in there? It's not just supposed to be her bedroom but more like a suite or a studio apartment type of feel, right? Maybe watch a show with her on her TV. Or do a project or play cards at her table or something. If she kept her door open and wanted company, maybe even the kids could go and visit, do something with her every now and then. Maybe she thinks of her bedroom just as somewhere to sleep and just always spent her time in the kitchen.

Could nicely tell her that it's not working for you to have the kitchen table unavailable all day and ask her to help you come up with a solution that works better for everyone. Where and when do your husband and kids eat? I would not allow them to hide upstairs at dinner time. Mom needs to get her stuff off the kitchen table by 4 PM so you can make dinner. Then EVERYONE comes to the table and eats, chats, etc.

I know how annoying the conversation with someone with dementia can be. The repetition is mind numbing. But if the family is having conversation she can participate or not. A lot of chatting can be hard for someone with dementia to follow, but that's OK. It's good for them to be around people, etc. Even if someone could come down and help with dinner prep and setting the table etc. Actually, does your mom do any household chores? She could help cut stuff up for the meal or set the table or do dishes after, etc.? Help her have something to do and feel useful. She may not want to but maybe say you could really use some help.

Also, maybe your family is uncomfortable with the kind of strange behaviors with dementia. Maybe it's time for you to talk with them too about lowering their expectations and understanding that grandma's brain is a little bit broken and she can't really help it. I always tell my sister to expect boring conversation with our mom. But you still have to try to talk to her.

My mom helps with laundry and folds allll the clothes for the 3 of us. Keeps her out of trouble and helps her feel like a productive member of the household. She also goes out to the mailbox. Find a few simple things like that that she can do.

Also try to get her out of the house. Are there any local things she can get involved in? Senior center? Senior lunches, etc.? Is she from your area?

Good luck!
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Luluhalls Jan 2022
I loved your response! Thank you for the great suggestions especially for me to sit with her in her room to get her comfortable with it.

I just signed her up for chair exercise class at the senior center near us. I will do it with her:)) She is scared to go to the senior center alone…so it’s not really an option to drop her off.

Your response really reminded me that I really need to try to talk to her rather than just answer questions….sometimes I forget that.

I will also have a family meeting….thank you again for these great suggestions. Some of the other answers were not helpful at all!
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No--it's absolutely not wrong, but she's not going to be able to fulfill your request. She can't retain her thoughts or what's happened beyond the last minute or two. Likely she's a bit at sea in your house, because she's lost the ability to remember things (My mom lived with me for 9 months and every day was a new day in locating the (labeled) cabinet with the breakfast cereal). She's lonely and at loose ends, and parking herself at the table seems the safest thing--at least there she's probably assuming she'll see people she knows, which is reassuring to her. She's probably also lost the ability to initiate anything, and if she's progressed far enough she's only going to be able to do simple things that only require a few steps--multi-step tasks or decisions may be beyond her. She isn't remembering from one minute to the next that she just talked to you or the kids-it might as well be the first time she's seen you that day, each time.
So. You made a promise to your dad. A lot of times, unless you're living with the person day to day, you wouldn't have a good idea of where they are in the disease and the challenges involved in their care. You've tried it out, it isn't a good fit with how your family is living right now. A couple with a house full of kids is not the same as two elderly folks trying to age in place. Your mom might benefit from the companionship in an assisted living or group home. You can also look around and see if there are any adult daycare's she could attend to give her something to do, and get her out of the house.

https://www.youtube.com/watch?v=22ZNZvN9UyY
https://www.youtube.com/watch?v=br5M3s7H7l4
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Your dying father did not understand the impact on your family when he made his request. And you did not understand the impact when/if you agreed to it. Your father actually wanted reassurance that your mother would be cared for. This does not need her to live in your house.

Your mother is only 76, and she could live for a decade plus. You need to start investigating options, and making it clear to her that she will need her own place to live if she can’t agree with the way you want things in your own house.
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