Asking for advice on how to handle some of the questions we get from my mother-in-law who is toward the later stages of dementia. We had camera's and alerts set up on her door, but she was starting to wander out in the middle of the night half dressed. We live next door, so were able to intercept her. She was also having TIA's (mini strokes). We were taking turns staying with her around the clock. So a year ago we made the decision to have her go to Assisted Living. I've read where they say to fib or lie or re-direct them. My husband has a very hard time with this. But to be honest, what do you say to them when they ask to go home or that they want to go live with mom and dad? It's hard. She always has a response, plus she repeats it over and over. At first my husband would try to explain why she couldn't. That she was there because she was having mini strokes and we needed to keep her safe. Now we say 'You can't leave until the doctor has said that you can'. To which she says that she is better now. To be honest, we hear several of the other residents say they want to go home too. I believe it is a form of Sundowners. But I'm just wanting to know how other people have handled this.
When mom wanted to come live with me and leave her memory care ALF, I'd tell her the doctor story. When SHE says you're ok to leave, then we'll discuss it mom. Change the subject immediately and distract her with photos, snacks, a walk, a story, or anything else that catches your fancy. Ativan is also the great calmer for a dementia patient, and helped mom with the Sundowning agitation she experienced in late afternoons and evenings.
Your only goal here is to keep mil calm and relaxed. The 10 Commandments don't apply to Alzheimer's and dementia.
You remind her that she is safe.
You tell her that people are there to make sure she is safe and is cared for.
Often when someone says they "want to go home" "HOME" is not a place it is a time when they were well, they were safe, they were not afraid, they were secure.
So reinforcing that they are safe, they are cared for is sometimes what they need. This is not "lying" this truthful.
If someone asks for mom or dad or any other loved one that has died to tell them of the death it is like they are learning about it for the first time and it can be upsetting, devastating, heartbreaking. This is where a "therapeutic fib" come in.
"Mom isn't here now, she went to the store." "Dad had to take the car to get it serviced" "Mom is at work"
Some may call this a lie, and maybe so, but to continuously tell someone that their mom died, their wife or husband died and to have a person with dementia live that over and over is beyond cruel.
Carry on with your gentle 'fiblets' - this will ensure that her reality remains as pleasant as can be.
Good luck.
She was complaining about having green beans with every meal as part of wanting to go home. In her head they were serving them for breakfast too. She was a farmer's wife for decades. We told her that she could make a plan about what she thought they should plant instead of green beans.
It worked for quite a while. We would visit once a week and she would tell us that she had been thinking about what to plant that year. We then discussed that and it actually led her to telling us about my grandfather and some of the years when the crops were good or not good. It gave us more conversation points with her and for a while she thought she was working toward the goal of "going home."
* First, it is important to know that 'you' need to respond to the changing brain, not the person you knew - for your entire life, up until dementia took hold.
* Setting clear boundaries is critical. Responses can be compassionate and short.
* When dealing with dementia, the GOAL is to keep the person as calm as possible and letting them know they are SAFE.
- This means:
1) NO ARGUING with them. You reflect back their words ("Yes, I hear you saying XXX and then you change the subject immediately / distract / refocus the person as best you can. And, yes, they will continue to repeat words / phrases, etc.
2) No talking 'common sense / logic' as they will not understand it or be receptive to it;
3) A person uses or believes in the notion of FIBBING when they believe the dementia inflicted person 'doesn't have dementia,' and believes that their brain is the same as it was for decades, until dementia took hold.
- This is both an intellectually understanding and an emotional / psychological learning/'gut' realization of what is happening. I would suggest that a person who has issues with what they consider 'fibbing,' is in denial of what is actually happening - it is difficult to accept that the person we have loved for our life time is not there / here any longer.
- Learning how to relate to a person with dementia requires education / training: Go to Teepa Snow's website (or call them). You will learn / find many (new) ways to relate / communicate with a person with dementia.
What I do . . . (it is my client, which emotionally is much different from family although the tools / responses are the same as this is compassionate communication)
1) Non-verbal responses are important cues: Smile (See #3 below).
2) Say
"Okay" ... "Oh yes, I hear you . . . "loud and clear!"
"Oh, I never thought of that ... that's a good idea."
"Oh yes, I understand
"I'll get back to you on that."
"I'm working on that."
" I'll check into it."
Respond in ways which leave the door open for her to believe you (1) hear her and (2) will or are working on it, i.e., making plans to get her home, for instance. Remembering . . . the key is to keep her calm, understanding she is SCARED, CONFUSED, NEEDS REASSURANCE(S).
3) Use non-verbal communication:
Besides smiling, hold her hand, make eye contact, perhaps rub her shoulders.
3a) Let her know YOU are there 100% focused on her.
4) Acknowledge her words while changing the subject
5) While my client talks gibberish, she seems to understand (some of) what I say. She will at times respond with a "yes" "no" or "okay"
I test her expressing a compliment and she responds in ways that she gets it.
Role play with your husband.
If he cannot shift the conversation and respond in ways to keep your Mom as calm as possible, he could say something like "I'll check with xxx (your name and get back to you."
- Develop a 'cue' sheet of responses. Depending on the situation, the sheet could be right there to use as a reference in real time.
Lastly, give yourself and your husband a lot of love, self-love, self-understanding and self-compassion. This is certainly difficult and heartbreaking. Dementia - learning how to communication with a person inflicted with dementia IS learning a new language.
- In addition to researching Teepa Snow, get a book or two. Seeing suggestions on how to communicate 'in black and white' is another way to learn / take in information.
Gena / Touch Matters
My response was usually to tell them that they're grown-ups and too old to still live with mom and dad.
"Home" means different things to people with dementia. Many times going "home" means returning to a time in their life when their life was good. I never told a dementia repeating dementia client that their parents have been dead for years or their spouse. No need to upset them. Just tell her she's an adult and too old to live with mom and dad.
If she repeats over and over try to redirect her attention onto something else. If that doesn't work and she keeps on with the constant repeating, stop answering that question. Totally ignore the topic she's repeating on not her. It's a dementia loop and really the only way to break her out of it is to ignore it.
Therapeutic lies have been used for years as they prevent agitation, anxiety, delusions and other situations that can be challenging to your LO and their care team. It is not about lying to the person, but about keeping them calm, peaceful and as happy as possible. Our LOs with dementia do not hear every word we are saying; in fact, we are often lucky if they hear every third word. Explaining a situation to them can be very difficult for them to comprehend. Think about when you’re agitated. What you want to hear most is something that’s going to calm you down– bring you peace. Later on when you’re calmer and able to comprehend a situation better, you are receptive to the full details. The fact that your LO is saying I want to go home is a sign of agitation.
A person with dementia is never ready for an explanation as they are physically incapable of hearing and comprehending explanations. You as the family member are the trusted person who can resolve their personal challenges. Saying these therapeutic lies to your LO will give them peace, which leads to a happier quality of life and, frankly, better care from caregivers.
The most effective caregivers I have encountered, be they professionals or family members, are those that use humor as a distraction. They acknowledge what the person is saying – – I want to go home – – and then they add something silly to the statement. For example, when my Dad said he wanted go home, I would ask him about the time he and his brothers ….a funny story from his childhood home. Then we would recount the story together with me making suggestions to complete the story.
When my Mom repeatedly asked the same question every five minutes it drove me crazy and I would get impatient. OMG it drove me crazy until I learned to use humor and we were both much happier. “You need to brush your hair.” I had literally just brushed it two minutes before going into her room. “ Mom, I just brushed it.” Mom: “Well, you need to do it again” Me: “I’m trying to be fashionable. The latest trend is to have messy hair and to dye it a neon color.”
Mom: “ Well, I wouldn’t do it.” Me: “Oh come on, mom, can’t you see me with bright pink hair with lime green, lightning bolts going down both sides. I could wear my hair with a black and white paisley blouse and bright red lipstick and heavy blue eyeshadow.” At this point my mother would be smiling and laughing because she knows I would never do that AND because I said all of it with a big smile on my face and a lilt to my voice. It never ceases to amaze me what a smile, and a lilt in the voice will do to help someone deal with unwelcome words..
Your mom can’t go home and you can’t take her there. Distracting her and humoring her will make both of you happier. You will be surprised at how many silly situations you come up with and how many smiles you will see on your mom’s face.