Joanne Koenig Coste often tells the story of the day her husband, Charles, who was diagnosed with Alzheimer's at the age of 46, scrubbed meticulously for two hours until he had removed all the Teflon from one of her pans. Instead of rebuking or correcting him when he waved the pan in the air like a trophy at the end of his self-appointed chore, she told him that was the best scrubbing job she had ever seen. The couple's children -- all under 13 years old -- cheered as well.
Was that disrespectful? Koenig Coste doesn't think so. In fact, she wishes she had learned to respond to him that way sooner. "On a very practical level, I definitely wish I had known that it's OK to lie to the person with Alzheimer's if lying is going to put you both in a better place," she says. In that situation, it was well worth being less than honest to boost Charles Koenig's self-esteem and lessen his feelings of helplessness. The next day, she says, he was still smiling even though he probably didn't remember why.
The former chairperson of the nation's first chapter of the Alzheimer's Association -- whose book, Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease , is still considered a groundbreaking approach to the disease -- Koenig Coste maintains that caregivers need to give up their hang-ups about lying. This is partly because speaking the disease requires reading the affected person's emotions and entering his reality, not expecting him to understand ours.
"The other night when I was speaking in Connecticut," Koenig Coste says, "a woman asked, 'How can I not tell my mother that her mother's dead? I can't do that to her.'" She replied that the woman could answer her mother's daily question by telling her that her mother is dead and living with her mother's sobs and screams. Or, Koenig Coste says, she could reply, "'Oh, I'd love to see her too. She's going to be here in about an hour. Let's have a cup of coffee while we're waiting for her.' Anything to just get through the angst. The problem is the emotion, not what the person is saying. When I say, 'I want to see my mother,' what am I saying? I'm saying, 'I don't feel very safe.'"
Certainly, if the person asks the question over and over, this could mean a lot of lying, but Alzheimer's changes all the rules, Koenig Coste says. For example, one of the most common remarks from Alzheimer's patients is, "I want to go home," even if they're in their own home.
"I can remember hearing nurse's aids on an Alzheimer's floor saying to patients, 'This is your home now.' Well, it's not if you're the Alzheimer's person. And then the patients get aggravated and agitated, and we give them medication to calm them down, when what we needed to do was give them a little 'fib-let': 'It's raining and freezing outside. Why don't we go tomorrow instead? Let's have some chocolate.'
"The secret is to focus on one thing at a time," she adds. "That's all an Alzheimer's person can do. So if I'm focusing on chocolate and a cup of coffee, I'm not thinking about going home. The other memory is gone. Will it come back? Sure, it could. And what does the caregiver do? You do the whole thing again. And when you see that the person is feeling good, how could you possibly feel guilty?"
My FIL has recently been diagnosed this year. So far he's still really good with a few hiccups. my MIL is older than he is, and my SIL lives with them. This may just be the info they will need in the days to come.
Woogirl, great questions! Take a look at this article entitled "Is dementia the same as Alzheimer's?": http://www.caring.com/questions/is-dementia-the-same-as-alzheimers You can find additional resources on health topics you're interested simply by entering a term into our search tool on the top right hand corner of the caring.com page. Hope this helps!
i would like to know the differents between dementia and alzheimer's? i am 57 and my mother is confused and really no help to much from the doctors. so please some on tell me what is the differents. i need help and sick my self. thank you and god bless woogirl
this is a helpful resource. I recommend hearing Joanne Koenig-Coste speak in person. I mean her book is fabulous and really speaks to every day, in person she is a great story teller & so easy to talk with and learn from.
I found this website to be very helpful for me and my sibling in our attempt to care for our mother who is in the late moderate stage of this disease. I never wanted to lie to my mother but I found that sometimes it makes it easier on her. (I like fib-let better) thanks
It really helps me in dealing with my Dad. I only wish my Mom could apply some of these helpful tools. It's ok to tell a little fib. It's OK if your BINGO cards )home game) are wrong. Thank you for sharing
I used the aversion technique often with my mother-in-in-law, only after trying the truth first. If it was something that was going to make her cry or be upset in any way, it was so much better for her to say, "We'll do it in a little bit..why don't we do this now?". Telling her that her parents and husband of 50 plus years had been dead for 15 to 50 or more years served no purpose to her, other than to upset her. So, if she wanted to talk to her mother to let her know where she was, she got a nice hot cup of tea and a snack of some sort. If she wanted to know when the cruise she was on (our house is rather big with a pool out back and lots of professional landscaping, so, I could see how she would have viewed living here that way! lol) was going to end so she could get back home, rather than continually reminding her that she lived here now, I would just say in 3 days it would end. She was more than satisfied with those answers and could focus on something else. You can't avoid questions they will ask, however, your job as a caregiver means that you have to take care of every aspect of their health, including their emotional health. The last thing I wanted for my mother-in-law was for her to be distraught over anything. I so agree with this article for people who are taking care of loved ones with dementia, of any sort. Luckily, I found these things to work on my own!
I found this to be a wonderful and helpful article! My mother was diagnosed in early August with MCI (Mild Cognitive Impairment) and her memory has been steadily declining. She called 911 four times in a 5 day period, (nothing medical was found, just anxiety and depression) and after being re-evaluated was deemed incompetent I was told she could no longer return home to live independently. so I had to find her a nursing home. She insisted on having a phone in her nursing home room, so against my better judgement, I transferred her home phone there...where she called 911 again from her nursing home room! She's been in the hospital now for 21 days in the behavioral medicine unit of our local hospital and may soon be released back to her nursing home soon. My biggest anxiety is, what if she asks about her telephone now? (I had it disconnected after she made the 911 call from her room). I've also been lying to her about the existance of her mobile home (where she lived independently up until nursing home placement). I had to sell it recently (which she doesn't know about yet) because her lease was due to expire and I didn't want to renew the year's lease knowing she can't live alone anymore. I feel terribly guilty about lying to her and am struggling with "Do I tell her about the sale of her home or not? There are some days she's totally cognitive, remembering her home and asking me to go over and clean it, take care of the food in the freezer & refrigerator which I did 2 months ago) and other days that she doesn't bring the subject up. I really wish I could get over the guilt of lying, or figure out a way to gently break the news to her that her home is no longer "hers"...