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?
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?
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.
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.
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.
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.
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.
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.
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.
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!
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!
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
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.