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.
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.
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.
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.
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.
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
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.
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