AmyGrace Asked October 2014
Mom has Alzheimers. Should we tell her that is why she has to move to assisted living?
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We are not going to tell Mom she has to move until the day we move her or she will freak out. She has to understand why she has to move or she will blame us and never accept it. (When we moved her out of her house 8 years ago, she blamed us and claimed she could drive for at least 4 years after the move to IL. We could tell her she needs more help, but she will say she doesn't. Should we tell her the real reason? She lives in a world of denial. She knows her memory is bad, but not that it is so bad that a conversation or something she has done she remembers only for 3-5 minutes.
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Some people need to wait longer to let normal settle in. This is one of those judgement calls in caregiving where you just have to go with what feels right.
Not by being outright malevolent to manipulate for my own benefit, but to deal with her in a way she is capable of handling. E.g. mom will take vitamins from the nurse, but not pills "because there's nothing wrong with me". So everything is a vitamin. She has to live there because my house is not safe with so many stairs and cats. We don't have the nurses around the clock or elevator or restaurant or shuttle buses. Etc. We did not directly tie the move to her decline. Mom, you don't have to worry about yard work, or somebody breaking in here. You don't have to worry about food or heat anymore. I used all the things that frightened or worried her in her house as selling points, so to speak.
Yes, she still pitched big dramaticfits about not being able to "go home" and interrogating me over where all her stuff went. Sometimes it was stuff she hadn't had in 25 years to start with. She told everyone with an ear that I was holding her hostage in that place, the food was slop, people were coming in at night to hurt her (hallucinations), and a long list of all the things she hated about it that were only in her head.
The version of things I got from staff who saw her on a daily basis was different. They were keeping an eye on her for me, and would tell me what she was up to.
Needless to say, she gave me the catastrophic version of the news.
My advice is to treat events very matter of factly without going into a lot of detail. Don't make it dramatic. Act "as if" this is normal and was the plan all along. Be positive. If a negative reaction happens, don't make it into a big deal. I used this phrase non-stop with my mom: "I'm sorry mom. We're all just doing our best. You'll be OK." I could see with my eyes, ears, and nose how she was really doing (just fine) vs. what she was saying. I could also tell the same way when she stopped doing just fine and started declining again.
There is a period of adjustment for her and you. Expect it.
Don't hover. Don't take any negative comments she makes personally.
Your prime objective is her safety and wellbeing, and sometimes that has to overrule what an individual prefers. Especially when that preference is no longer possible.
When my mom went into the senior apartments, we visited every weekend to see about her laundry, groceries, go out to eat, etc.
There may be resentment and demanding to go home one day, but the next, no memory of it. A detailed discussion about AD may likely be forgotten anyway.
I think it is important to be honest about medical diagnoses and information. Has your mother been formally diagnosed by a geriatrician or neurologist? If so, she should have learned at that time that she had Alzheimer's Disease.
I think in discussing the move with your mom, if she has the capacity to understand her diagnosis, then it should be brought up as a factor of needing to move. "The doctor was concerned that with your memory troubles it wouldn't be safe for you at home"...etc. If she does not have the capacity to understand the diagnosis then you might focus on other benefits of moving.
It is often very upsetting to move a loved one into more care if they will react poorly. Most of the time, the senior that has disliked greatly the idea of moving absolutely loves their new living situation once they get there and get involved with the activities. Just keep in mind there is a light at the end of the tunnel.
My husband accepted and understood his dementia diagnosis. He knew that is why I would not leave him alone and he had to go to a day care program. He absolutely benefited from knowing.
My mother has used denial as a major coping method all her life (or at least the part I know about!) and it would be cruel to force her to confront such an unpleasant reality. For her it was better to explain the specific services she would be getting, such as all of her meals prepared, entertainment, bingo, laundry services, etc. Now she sometimes complains and worries about her memory. If she can't remember whether she's eaten or not, for example, we can say, "Well, your memory is a little weak now, but the great staff here keep track of all that for you. They remember if you've been to the dining room and if you've had the pills. It is a good thing you are here." And she agrees. (Much to our surprise.)
You might get by with something like, "The doctor wants someone to keep a closer watch on your medications and your diet, and they have people here you can do it," without naming a specific disease.
You have got to do what you have got to do. How you present it to your mother has to be based on your understanding of her personality.
But there is a more important point in your post. Again, of course I don't know your mother, but you seem to be hoping that your mother will understand the disease and therefore come to accept her need to move to ALF. I'm sorry to say that this strikes me as a forlorn hope.
Instead, you and the family will need to accept that your mother may be angry, and probably will blame you for her further loss of autonomy. But you're not arranging this move to a safer environment to win popularity with her, are you? You're doing it because it's the right thing for her welfare. So no matter what blame she throws at you, try to be comforted: you're doing it for her benefit even if she cannot understand that.