This question is directed at those of you who have one or both of your elderly dementia parents living in your home (in my case, my Mom pays a small amount of rent but the money is not my issue at all).
My mother is 76 and recently diagnosed with mild dementia. My father passed last year and she moved in with my family (at my dying father’s request). I have one brother and he is unwilling to take her in or help more than a few weeks a year. We turned our den into a large bedroom for her downstairs leaving my family of 7 (husband & 5 older high school/college age kids) a small living room and kitchen as our only spaces downstairs to live in. Mom has all the comforts of home in her room. She has a computer desk and her old kitchen table and chairs along with a television. Lots of windows and sunshine too. We had anticipated she would spend quite a bit of time in her “small comfy apartment”. That has not been the case:(
My mom’s only hobbies are to read the paper, smoke cigarettes outside on our porch, do word searches and look at the weather station (letting us all know the daily temperature a minimum of 25 times a day). The problem that we have found since she moved in with us is that she has decided to park herself at our kitchen table the ENTIRE day when not smoking outside. She sits facing all the doors so she directly facing anyone that walks in. She spreads out all of her word searches, dirty tissues (that she leaves directly on the kitchen table), pens, papers and about 6 seat cushions not to mention the large towel that she has folded up on the table to rest her elbow on while she’s doing the word searches. She leaves these items on the kitchen table 24/7 and does not put them away. When I try to put them away at the end of the day, she puts them back on the table and gets upset with me. It’s a fight I don’t wish to have with her so I try to pick my battles. The items don’t bother me as much as her constant presence.
My biggest issue lately has been that my children do not want to come downstairs anymore from their rooms. I am beginning to do the same thing. I’ve even noticed that my husband has been spending more time away from home. The reason they don’t want to come downstairs is because she is always sitting there ready to pounce on them asking them 50 questions and often repeated questions and questions with blatantly obvious answers just to say something. When I come into the kitchen to cook, she will then decide it’s time for her to come in and put away her dishes or even start making some random snack. When I nicely ask her to please give me space in the kitchen, she will tell me that I’m being mean and “ridiculous”. I’ve tried talking reason with her to please give me some personal space in the evenings to cook and be alone. When I come into the kitchen each night to cook….. she has forgotten that I have asked her to give me this time and proceeds to do the same things over and over each night. I am at my breaking point. She is not a mean person… although often can be negative and likes to point out things like how much I bought at the store when I bring bags home. She is very selfish and does not think about the needs of others..only those of herself. I realize that this is part of her disease but she was this way before too. I make dinner each night which I serve and often I will sit with her at the kitchen table to eat. I found that my kids and husband want to eat with us less and less:( I know it’s because of her.
I’ve tried my hardest to be nice to her. Sadly, I found myself getting angry and being short with her more and more. I feel like my personal space has been infringed and that my whole family does not want to be downstairs anymore because of her. What do I do? Do I tell her that she has to go in her room for specific hours of the day? Being that she doesn’t remember a whole lot short term …how would that even work? Is it wrong of me to want to have time downstairs in my kitchen?
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.
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
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!
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!
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!
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.
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.
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.
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?
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.
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.
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.
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.
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?
Is there another common area where you can set up a table for her so she can spread out yet not be in everyone's way? If not I would tell her that she needs to be out of the kitchen area by 3pm every day so you can get your work done.
Grandparent or not, teenagers normally do tend to hide in their rooms. Would it be possible to get each of them to spend 15-30 minutes a day interacting with her? Maybe one could be in charge of helping her move her stuff from the kitchen back to her room each day?
She has BY FAR the best part of our house which we renovated for her with built in closet! She goes to bed at 11:00 sitting at main kitchen table the ENTIRE DAY by her choice. Asking her nicely to use her room is like pulling teeth. Her table is 10 feet from kitchen but she says “I want to be with everyone out here”. How do I argue with that when she can’t reason or see that she isn’t allowing my nuclear family to have our time alone and space.
As for AL ….she is going in 15 months. We have her on a wait list near we are building our new home (thus the waiting period). I’m not moving her out until then ad that is too many adjustments for her not to mention lack of availability of any decent senior care around where I live now.
During the holiday meeting, book your mom into the nicest AL offering respite. Tell her it's a senior hotel, which is not even a therapeutic fib. The AL considers itself on audition and likely will make sure that the elder's experience is as positive as possible. She might meet vacation friends of her own.
She isn't invading "private space" by hanging out in the living room or dinning area but wanting to be with people in the common living areas.
Do you want her isolated in her room?
Moving a loved one into the family home must work for ALL of the family members involved in order for it to be successful. But it's not. Your mother has taken over your family home and invaded your children's sacred space. Nobody feels comfortable in their own HOME, yet you're putting your mother's preferences and your late father's wishes above your family's wishes.
When my father was dying, he asked my husband and I to 'take care of mom'. He didn't specify HOW we were to take care of her, just that we take care of her, which we had been doing all along and intended to continue doing, as I am the only child. We promised dad we would do so. They were both living in Assisted Living when dad passed b/c I vowed NEVER to move my parents into my home; I grew up with a grandmother living with us and it ruined my childhood AND my mother's life and our entire family unit. So my mother is now 95 with advanced dementia and living in a very nice Memory Care ALF where she's well cared for. I have plenty to do FOR her and on her behalf, too, I might add. I have honored dad's wishes and am caring for my mother, and seeing to it that she's given care by teams of CGs 24/7.
Please consider your children's welfare in this situation and not just your mother's welfare or your father's dying wishes. Your first priority should be to your husband & children who's home has now been invaded by your mother with dementia. You cannot reason with her and ask her to 'please stay in her rooms' b/c that won't work; they cannot BE reasoned with. "Early dementia" or not, dementia is not something that lends itself to reason. Period. And, as the dementia progresses, which it WILL DO, this is the tip of the iceberg you're seeing with her behavior. Trust me on that. You need a plan moving forward and you need to formulate it NOW.
Best of luck keeping your family's life intact and keeping your mother safe & well cared for at the same time.
You moved her in not understanding that the disease isn't just a memory thing, but one of comprehension, empathy and behaviors as well.
You're writing as if your mother still has the capacity to retain information and make a conscious decision to respect your boundaries, and would be able to remember to stay out of your way.
That boat has sailed.
If your mom's comprehension is so hampered by the disease that she wasn't affected by your dad being wheeled out of the house she's at least stage 4.
https://tamcummings.com/stages-of-dementia/
If you want to start sending her to her room you can. Do you think that it will be like the 'weather report'?
I do.
Are you up for herding her to her room every 10 minutes?
Her limitations and care requirements will only increase. Right now she might do well in AL, not MC. She has no healthcare needs, so a nursing facility is not necessary.
It would be kinder to move her while she still has enough capacity to eventually develop a routine, rather than keep her at home and watch your relationship erode further. You would get your relationships both with mom and kids/husband back.
I speak as someone who sees the money my mom saved all her life go out the door to the tune of $6000/month so she can play solitaire on her ipad and do some activities. But she takes showers for them, and likes the food and her room. I get to go over and visit or take her out on my schedule and we have a nice time together. I get to focus on my job all day, too. And can get up and go do something without planning it around her. I am thankful every day that she saved up for her care. At least we can have our mother/daughter relationship back. At the rate she's progressing she may have to eventually go on medicaid and share a room at a facility, but her world is narrowing down as the disease moves on, so that at that point it'll be ok.
Why not at least look around at some assisted livings in your area?
Consider browsing the threads at the Alzheimer's org. as well--I think you'd see a lot of the same advice. many posters over there in your situation...
https://www.alzconnected.org/discussion.aspx
Yes she is stage 4 (considered medically mild Alz or early dementia). That was confirmed by her neurologist.
If she can't be in the kitchen with you and gets upset when you tell her so, oh well, better she is upset then you. Maybe start telling her half hour before you need the kitchen to do what she needs because at dinner o'clock nobody but you in the kitchen. This means clearing the table, wiping it off and go clean yourself up for dinner.
Can her table be positioned in her room in a way that she can see and interact with the family?
If your mom is only at mild dementia stage, which I don't think so, then she is using manipulation to get her way at the expense of everyone else in the house. Think about this.
Caregiving has to work for everyone involved or it doesn't work. Your family isn't up for this, it's not working, how far are you willing to push them so she doesn't have to get upset?
I don't have a parent living with me. Tried it and knew it wasn't going to work. I am a grown woman, it was my house and I refused to be put under my dad's authority because he needed help. I sure wasn't going to sacrifice my husband so my dad didn't have to do something he didn't want. That's what you are doing. Sorry, I know you aren't ready to face that but, it's you telling us that is the actual situation. Everybody in your house is being sacrificed so your mom doesn't get upset.
Have you thought about spending some of this hard earned money on adding a MIL suite to your house? It could actually be a small apartment with no direct access to your house or a locking door between, if you wanted. Then mom could go home and come visit.
One thing that I think all of you might consider, learn how to acknowledge her without getting caught up in the dementia loop. So what she tells you 25xs a day what the weather is, oh okay, thanks for that information 25xs a day isn't that hard. Annoying? Maybe but, like you said, you need to pick your battles.
I am not trying to be rude but, I think you are picking the wrong battles and really need to take a good, hard look at how to make this work FOR EVERYBODY, and stop letting a demented mind run the show.
I would tell her when she starts in on controlling the issues, mom, it is either you clear the table and be out of the kitchen by ???, or you will have to find some place else to live. Everyday I would tell her this if she started controlling my kitchen. No mom, do it and do it know or tomorrow we look for housing. Tears and tantrums would get her a time out in her bedroom. I would gently take her arm and take her into her room, close the door and let her cry. It's how you deal with difficult children and she wants to behave like one, well...
Of course, this is all based on mild dementia, because once it gets advanced, all bets are off.
Tell mom that the house needs major repairs.
While everyone else is staying with their own friends, mom goes to a senior hotel, otherwise known as respite. She might express preferences for which she likes best
My best friend always thought she’d take her mother in. After dementia, she placed mom in a small board and care where everyone would be interested in numerous weather reports or whatever puzzles anyone did. They had their own friends to go to exercise class with whereas your mom needs you, personally you, to even go with her for one hour at a senior class.
look, right now she needs a peer group. You cant be that for her whereas an al might
And there would be exercise classes classes to go to with peers
Maybe explain to the kids what dementia is. People can't remember what they say or how many times they say it. The brain is broken and can't be fixed. It's not really being selfish in regard to cooking when you do - just happens to be that seeing you in there may trigger a thought for her that she wants to eat.
There will come a time that she may not remember anything at all, even you. Take advantage of what she does remember right now. At some point you may need some help from your own kids - you are setting the example of what is acceptable. Think about how you might feel as a member of a family who really wants you out of the main living area.
You might look in to an elder community facility living arrangement where she would be around others her own age. Maybe they wouldn't mind the ramblings of her thoughts since there could be more people around in the same boat. I would definitely check it out.
Whatever example op thinks she is setting, all her children are rejecting it. In fact so is her Mister. They feel their home has been taken over along with their mother’s life.
Op feels her mom can’t even be alone for an hour for supervised exercise without her personally being there. As op has minor children to consider, the ops prerogative to be the 24/7 in her home cannot happen as it appears the others are already outta there or planning to be as it is.Even if it were possible, op is psychologically incapable of telling mom no.
Even when her own family is.
Set your table early so she can figure out it is being used for dinner.
Feed her earlier than the high schoolers, then move her at least to her own table or to the T.V.
Understand that the children in high school would be avoiding family meals anyway at this stage of development. Put a table upstairs for them and husband, they can carry the food upstairs. Enforce the dinner hour, but upstairs. Yes, caregiver, you get to eat with Mom, unless you can get away after feeding her. 😭 Doesn't Mom get sleepy after a meal?
Of course you can do this with aplomb. (Is that even a word?) Lots more work for you, but maybe family will appreciate it. Or, they can individually ask to be excused, and carry their own plates upstairs to the table and eat.