It really doesn't mattwr what you say and it doesn't matter that their comments may make no sense. Just say and talk in a way that shows love.
Just remember fir the 1st couple years of your life, your mom couldn't understand you either but as a mom, she just offered what she thought you as baby needed. And now it's your time to return the favor.
My Dad is 96 and he doesn't remember much but he knows when he's feeling happy or sad, he knows when he feels good or bad, he knows when he's hungry or thirsty and he knows if he feels over and safe.
The thing I found in dealing with my dementia clients is to S-L-O-W D-O-W-N. Don't expect responses quickly. Don't ask questions. Don't try to make sense out of her nonsense talk. Going thru daily tasks, like cooking or cleaning, I often just explain what I'm doing. Browning the meat, cutting tomatoes, turning on the vaccuum. Or we sit on the couch together and look through a magazine and talk about what we see. Don't turn the page often, which can be confusing. Point out details and talk about them. Oh, this is such a pretty pillow. I would love a pillow like that. I bet it's really soft. I can just picture a kitten all curled up on that pillow. When I was little I had a kitten named Mittens..... We did a similar thing with a big painting she had on the wall. 'Those ladies are all dressed up. I bet they just came from church. Too bad it's raining, they will ruin their fancy gowns. I bet there was a wedding in the church today."l Or sit together and read fairy tales to her. Illustrated books can be enjoyed as the story or just a series of pictures. Best of luck to you.
How I wish I could simply hand you a copy of "Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying" by Maggie Callanan and Patricia Kelley, as a physician friend of mine did for me when she learned of the journey I was about to embark upon years ago. But, thankfully, it is easily available now on Amazon and elsewhere, now that it is recognized as the classic it is.
The authors, both experienced hospice nurses, first introduced me to the concept of "nearing death awareness," and it changed my experience with my dear uncle, and his with me as his caregiver, I have no doubt, into a pleasant experience for both of us!
As we near death we grow ever more aware of the next world and therefore less and less aware of this world. We may speak of seeing a loved one who has died before us. We may speak of some mode of travel; with my uncle, it was the train. I learned to go with his flow. I told him that I would like to sit with him while he waited. That my ticket was for a later train, but I would not be far behind. SO, SO much better than trying to correct him in my ignorance!
I learned that to some extent we may have some control as to the timing of our death, after "Last Rites" can be given, waiting until Jimmy can get here or simply waiting until our spouse has left the room or has the support of family members; and perhaps we wait until given permission to let go by those we love.
My service dog, Jazz, and I stayed in his hospital room with him, and in the hospice wing of his nursing home following that. Every time I needed to take her out, I told him what I was doing and how soon I would return.
To this pleasant environment I added a mix of soft classical music, a proven calming benefit (It is even used in many animal shelters for this reason!), and a diffuser for calming essential oils. And I bathed our entire experience in prayer.
There were so many precious moments. Although he could agitated in the night, twice he sat up, pointed up past the ceiling, and exclaimed, "Look! look! There's a guardian! There's a guardian!"
I always placed my wheelchair close by his side and up at his height. At one meal he was eating pea pods. Suddenly, he ducked under his overbed table; I assumed he had dropped one. No, he found my hand, gently lifted it up…and kissed the back of my hand! Non-verbal though he was, he melted my heart with his loving gesture of thankfulness.
Several times he rose out of his dementia to say, "You could hold me if you want to." But try as I might, I could not.
My occupational/massage therapist came to the hospice to treat me, either in the rehab clinic or in the room. The morning I called the hospice nurse to come, we stayed in the room. At one point my therapist said, "Jane, I think you'd better get up." As if we'd rehearsed it, I came alongside him nearest me while she went to the other side. As one, we picked up the draw sheet and moved his thin body toward her side. I transfered into his bed, and somehow I found myself cradling him. "Uncle Ed, I'm holding you now," I said. A moment later, he died in my arms.
I could not be more thankful for the many "final gifts" those two hospice nurses-cum-authors gave to me and my dear uncle. May their little book bring blessings to the two of you as well!
Yes, it is very frustrating not to be able to understand what your mom is saying. However, I never let that stop me from "conversing" with my wife. I didn't understand her and she, I'm sure , didn't understand me. Our conversations were essentially a monologue on my part. I once heard my wife conversing with another AD resident, neither one making any sense but still talking. Even though she wouldn't respond, on my visits I would tell her how the family was doing, what the weather was like and even asking where we should go on vacation.
So you won't figure out what she's saying but do your best and don't stop talking to her. Knowing you're there with her may bring her some comfort.
I am in this situation my mom is 92 has had LBD going on 4 years, nothing she says makes any sense. I thought this would be a time when she would tell me stories of my family’s past. She did years ago but I was not interested at the time. I am now older and this would be the time I would appreciate our talks. But that will never happen. I just go along with whatever she is saying. Like she wants to know where her Mother is, why she hasn’t seen her. I simply tell her she hasn’t gotten home yet, or she wants to go home. I tell her she can’t because they are remodeling the house when it’s ready I will let her know. By going home she means 1930’s with her family in Lawrence MA. It really doesn’t matter what I say she won’t remember in a couple hours that we even spoke.
My mom has asked about her parents as well. She asked if they knew where she was. I said yes they do know where she is and they are glad she is safe and living close to her children.
When an Alzheimer's patient is no longer able to converse in the present reality of our world, we have to go to wherever the patient's mind currently is. It's less frustrating for both caregiver and patient. (See Rachel Wonderlin.) When conversation gets too frustrating, turn on music. The patients have a deteriorating brain disease , but their feelings and emotions are among the last to go. They can sense and enjoy your love and care even though their brain can no longer find he words to communicate.
My mother has asked for her mother, and usually when she is ill or stressed and needs comforting. I told my mom her mother died about 50 years ago and is with her family in heaven, happy and not suffering. I told her she will see her again and that she is always in her heart. She understood and accepted my explanation with a sense of calm and peace. My family and I converse with her in a gentle and caring manner. Sometimes things don't seem right, but it is usually a UTI starting. Anything out of the ordinary I get her tested. I hold my mothers hand, give her a hug and tell her everything will be ok, with God anything is possible and we say a special prayer. We used to have holiday parties and most people would not talk to my mother, sad but true. I always kept an eye out for that and made sure I paid attention to her. We sing songs together, pray together and talk about old times, which she remembers well. At 97 going on 98 on Tuesday, I am very grateful she is as good as she is. She knows us and is happy and content. Wishing you the best on your caregiving journey with your mother.
that works for some. Reminding my mother (now deceased) that her Mom passed was tried one time. She got mad and said she saw her at the mailbox. She had every deceased relative alive again in her mind. I pretended too to keep her from getting upset and mad. I made excuses why we could not visit them. She said my brother’s death from car accident was all a mistake that it was “ that other boy” that died and was adamant about it. I said oh, I didn’t know but glad you told me. My brother died in 1977. So she brought him back in her mind and undid the bad news to suit her mind. She was in a nursing home by then, 84 years old. No UTI. Each person is different and we just adjust to whatever we can to keep them calm. Dementia is awful.
I have cared for my 92 yr old dad for the last several months. He is in severe stage dementia, he has a bladder catheter and is bowel incontinent. Even though he has much trouble getting a thought across and understanding anything I say, I have been able to make a connection with him through loving expressions and touch. He understands that very well and will respond in kind. We make loving eye contact and he will pat my back and even though he cannot ever speak a sensible word let alone a sentence he will say “thank you honey” “ you are so pretty” and “I love you”. I believe dementia patients even when speech is lost can make valuable emotional connections, probably more important than conversing.
I've moved my last two comments to the top of this page:
* People with dementia ARE VERY SENSITIVE to feelings so 'try to' convey compassion and understanding, no matter what words are used (by them or you).
* Keeping them as calm and emotionally even as possible based on how you verbally communicate is important. If you can, hold their hand, look them in the eye, smile.
* Do set boundaries; do not allow yourself to be verbally abused. Leave the situation for two minutes, two hours, a day - whatever you need. Do not burn yourself out staying in the muck. If you do, you won't be any good to them or yourself. Maintaining your own well-being is priority so you can assist them. * * * * * * * * * * You take their lead and keep answers / responses short. Important to remember: * Do not argue or correct a person w/dementia. * Acknowledge / 'reflect back' their words to you, i.e., if they might say "I need to get out of here now, take me home" Response: "I hear you want to go home. What clothes would you like to take with you?" or "we're working on setting up your room just as you like it."
3. Shift the focus of their comments to one that validates what they are saying, i.e., "I'm miserable and you aren't helping me at all. What's the matter with you?" Response: "I'm so sad to hear you feel miserable. How can I help you feel less miserable"
DEMENTIA IS LEARNING A NEW LANGUAGE and it often isn't easy, even for those of us working with people for years (as I have been doing). If you get stuck, validate and acknowledge their words and say "I'll get back to you on that, (1) you're making a valid point" or (2) I need to give that more thought (or consideration) - and switch the subject / focus.
* BE GENTLE with YOURSELF. This is not easy to navigate. Some people are so smart (one of my clients has a Ph.D. in law and held very high admin positions in the healthcare field years ago). - I've been thrown off several times- needed to set boundaries as best I can, i.e., "I can't call AT & T now, their office in New York is closed" . . . or "I already called them and they said they're on it, giving you a priority." "They won't take to me as the account is in your name. Often calling customer service is a long phone wait time - and often I've experienced cust service reps 'trying to talk' to my client w/dementia and going in circles, and they don't know what to do. When they start asking her questions to validate who she is, she can't do that and hangs up.
* When she asked me why her cell and home / landline couldn't be the same phone number, I had to think about that. YOU DON'T WANT TO get into details or specifics of common sense. I ended up saying that they are two separate companies . . . they don't work together. That sufficed her although it took me a while to come up with it (which is true).
* IT ISN'T going to be smooth sailing. It is about learning, compassion and re-directing.
* Is important to know that sharing 'your truth' regardless of the truth is okay as you are dealing with a brain that doesn't process information as it did - they are often in their own world, if not always - although there are OFTEN moments of lucidity (which always surprise me)
* One client years ago said "what do you call a person like me who needs a person like you?" I said "a person who needs some help or support." That was the end of it.
* Navigating this language / brain chemistry terrain is learned. It is not a natural way to communicate as we usually / always have. AND families are 99.9% thrown into this situation without any knowledge or experience in how to deal with it. Gena
I just listen and let my LO lead the conversation-which as most posters say-does not make sense to family members/caregivers. I go with the flow and try to give my best response when LO is scared or sad. I say she is safe receiving good care. I do not ask a lot of questions and tell her to ask someone at her facility for help if she needs it. I say care about her/love and miss her-seems to help calm her. Just listening without trying to make sense of it-reassure she is not alone and the family does care-even if we can not see or be with her all the time. I take small things-cards, cookies, flowers. when I do visit-maybe be reminders of our time together. LO seems to like to have cards to hold on to-look at maybe helps in some way. These conversations with her can be sad and confusing to me as I know she is trying to communicate and gets lost and frustrated by not getting her message across.
Just say and talk in a way that shows love.
Just remember fir the 1st couple years of your life, your mom couldn't understand you either but as a mom, she just offered what she thought you as baby needed.
And now it's your time to return the favor.
My Dad is 96 and he doesn't remember much but he knows when he's feeling happy or sad, he knows when he feels good or bad, he knows when he's hungry or thirsty and he knows if he feels over and safe.
Going thru daily tasks, like cooking or cleaning, I often just explain what I'm doing. Browning the meat, cutting tomatoes, turning on the vaccuum.
Or we sit on the couch together and look through a magazine and talk about what we see. Don't turn the page often, which can be confusing. Point out details and talk about them. Oh, this is such a pretty pillow. I would love a pillow like that. I bet it's really soft. I can just picture a kitten all curled up on that pillow. When I was little I had a kitten named Mittens.....
We did a similar thing with a big painting she had on the wall. 'Those ladies are all dressed up. I bet they just came from church. Too bad it's raining, they will ruin their fancy gowns. I bet there was a wedding in the church today."l
Or sit together and read fairy tales to her. Illustrated books can be enjoyed as the story or just a series of pictures.
Best of luck to you.
The authors, both experienced hospice nurses, first introduced me to the concept of "nearing death awareness," and it changed my experience with my dear uncle, and his with me as his caregiver, I have no doubt, into a pleasant experience for both of us!
As we near death we grow ever more aware of the next world and therefore less and less aware of this world. We may speak of seeing a loved one who has died before us. We may speak of some mode of travel; with my uncle, it was the train. I learned to go with his flow. I told him that I would like to sit with him while he waited. That my ticket was for a later train, but I would not be far behind. SO, SO much better than trying to correct him in my ignorance!
I learned that to some extent we may have some control as to the timing of our death, after "Last Rites" can be given, waiting until Jimmy can get here or simply waiting until our spouse has left the room or has the support of family members; and perhaps we wait until given permission to let go by those we love.
My service dog, Jazz, and I stayed in his hospital room with him, and in the hospice wing of his nursing home following that. Every time I needed to take her out, I told him what I was doing and how soon I would return.
To this pleasant environment I added a mix of soft classical music, a proven calming benefit (It is even used in many animal shelters for this reason!), and a diffuser for calming essential oils. And I bathed our entire experience in prayer.
There were so many precious moments. Although he could agitated in the night, twice he sat up, pointed up past the ceiling, and exclaimed, "Look! look! There's a guardian! There's a guardian!"
I always placed my wheelchair close by his side and up at his height. At one meal he was eating pea pods. Suddenly, he ducked under his overbed table; I assumed he had dropped one. No, he found my hand, gently lifted it up…and kissed the back of my hand! Non-verbal though he was, he melted my heart with his loving gesture of thankfulness.
Several times he rose out of his dementia to say, "You could hold me if you want to." But try as I might, I could not.
My occupational/massage therapist came to the hospice to treat me, either in the rehab clinic or in the room. The morning I called the hospice nurse to come, we stayed in the room. At one point my therapist said, "Jane, I think you'd better get up." As if we'd rehearsed it, I came alongside him nearest me while she went to the other side. As one, we picked up the draw sheet and moved his thin body toward her side. I transfered into his bed, and somehow I found myself cradling him. "Uncle Ed, I'm holding you now," I said. A moment later, he died in my arms.
I could not be more thankful for the many "final gifts" those two hospice nurses-cum-authors gave to me and my dear uncle. May their little book bring blessings to the two of you as well!
So you won't figure out what she's saying but do your best and don't stop talking to her. Knowing you're there with her may bring her some comfort.
I just go along with whatever she is saying. Like she wants to know where her Mother is, why she hasn’t seen her.
I simply tell her she hasn’t gotten home yet, or she wants to go home. I tell her she can’t because they are remodeling the house when it’s ready I will let her know. By going home she means 1930’s
with her family in Lawrence MA. It really doesn’t matter what I say she won’t remember in a couple hours that we even spoke.
The patients have a deteriorating brain disease , but their feelings and emotions are among the last to go. They can sense and enjoy your love and care even though their brain can no longer find he words to communicate.
* People with dementia ARE VERY SENSITIVE to feelings so 'try to' convey compassion and understanding, no matter what words are used (by them or you).
* Keeping them as calm and emotionally even as possible based on how you verbally communicate is important. If you can, hold their hand, look them in the eye, smile.
* Do set boundaries; do not allow yourself to be verbally abused. Leave the situation for two minutes, two hours, a day - whatever you need. Do not burn yourself out staying in the muck. If you do, you won't be any good to them or yourself. Maintaining your own well-being is priority so you can assist them.
* * * * * * * * * *
You take their lead and keep answers / responses short.
Important to remember:
* Do not argue or correct a person w/dementia.
* Acknowledge / 'reflect back' their words to you, i.e., if they might say
"I need to get out of here now, take me home"
Response:
"I hear you want to go home. What clothes would you like to take with you?" or "we're working on setting up your room just as you like it."
3. Shift the focus of their comments to one that validates what they are saying, i.e.,
"I'm miserable and you aren't helping me at all. What's the matter with you?"
Response:
"I'm so sad to hear you feel miserable. How can I help you feel less miserable"
DEMENTIA IS LEARNING A NEW LANGUAGE and it often isn't easy, even for those of us working with people for years (as I have been doing). If you get stuck, validate and acknowledge their words and say "I'll get back to you on that,
(1) you're making a valid point" or
(2) I need to give that more thought (or consideration) - and switch the subject / focus.
* BE GENTLE with YOURSELF. This is not easy to navigate. Some people are so smart (one of my clients has a Ph.D. in law and held very high admin positions in the healthcare field years ago).
- I've been thrown off several times- needed to set boundaries as best I can, i.e.,
"I can't call AT & T now, their office in New York is closed" . . . or
"I already called them and they said they're on it, giving you a priority."
"They won't take to me as the account is in your name. Often calling customer service is a long phone wait time - and often I've experienced cust service reps 'trying to talk' to my client w/dementia and going in circles, and they don't know what to do. When they start asking her questions to validate who she is, she can't do that and hangs up.
* When she asked me why her cell and home / landline couldn't be the same phone number, I had to think about that. YOU DON'T WANT TO get into details or specifics of common sense. I ended up saying that they are two separate companies . . . they don't work together. That sufficed her although it took me a while to come up with it (which is true).
* IT ISN'T going to be smooth sailing. It is about learning, compassion and re-directing.
* Is important to know that sharing 'your truth' regardless of the truth is okay as you are dealing with a brain that doesn't process information as it did - they are often in their own world, if not always - although there are OFTEN moments of lucidity (which always surprise me)
* One client years ago said "what do you call a person like me who needs a person like you?" I said "a person who needs some help or support." That was the end of it.
* Navigating this language / brain chemistry terrain is learned. It is not a natural way to communicate as we usually / always have. AND families are 99.9% thrown into this situation without any knowledge or experience in how to deal with it. Gena
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