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?
There is professional approach to at least minimize it.
I'm thankful that at least my grandma-in-law isn't clingy, and content to zone out in front of the TV most of the time.
I don't have much in the way of advice. Just wanted to assure you that your feelings are valid, and it's absolutely not wrong to want your own space.
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Now I'm noticing that my husband is "working" outside more and I'm staying in our bedroom more reading or whatever. Then she gets mad at us (him) for ignoring her. If she had her way, she'd have us sitting with her all day drinking tea and watching TV. She lived alone before she came to live with us, so I'm not sure why she seems to want to spend every minute with us now.
To me it seems you really do not have the space. She needs personal space, but not on your kitchen table. If there is no room in the house, try the senior center, the library, even a table of shed in the back yard. Give her functions and routine everyday besides word puzzles.
???
You say your mom still recognizes all your family. She asks all these questions, talks about the weather and parks her stuff so that they'll talk to her, which they are increasingly not. From all you've said, your family feels mostly seething resignation.
She needs a peer group where she can do her puzzles around people who might be genuinely interested enough to have a conversation with her. People to whom every weather report is new news.
OP meanwhile feels she can't leave her mom alone for one hour at an exercise class. So she'll be between this aide and mom trying to get them to be "friends" in mom's eyes. If she succeeds, what happens to Special Friend when it's more than doing puzzles.
OP should realize that the whole family besides her and mom have moved away from whatever inheritance carrot is being dangled here. The whole family already sounds like they're increasingly going to leave because there's no care plan. She can say she tries the aide to help with companionship, but that has to be followed by saying that when she can no longer toilet, or shower, or smoke appropriately outside, that's the day she goes into a home.
Which is coming. So why delay things? The Mom has money and seems like a natural extrovert. Why NOT give her a peer group of people?
You said you don't want to upset her so you pick your battles. Doesn't sound like you have put your foot down for any of her behaviors.
Learning how to not get caught up in the dementia loop means you aren't answering the same question 50xs. You grunt, shake your head, say we just covered that or something else. You don't engage with it. You don't give it any head space to frustrate you.
I'm not trying to sound rude but, your responses seem to shoot every suggestion down. This might be why your family is avoiding the situation because you are not hearing anything. It's like you can't look at the big picture and you are stuck on the kitchen table issue but, not willing to make any changes. That is frustrating for people. Kind of a quit complaining about something you refuse to do anything about situation.
Move her bed into the small room and take your den back. It's fine that her clothes aren't kept where she sleeps. Giving her the best common space and she doesn't ever use it is a waste for your family. Keep the table in there and encourage your kids to use that table, once it's the family space again.
You all are miserable with the situation as it is, you need to do something different, because 15 months being miserable is a lifetime. Your mom isn't the most important person in the house, you all matter.
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.
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.
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.
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
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
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.
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.
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?
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.
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.