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I was so glad to find this forum. Dementia and Alzheimer's the older could have been written yesterday. I've been very upset by my mom's death 2 years ago. It was confusing and I felt, and still feel, that hospice did not explain enough to me and left me alone to decide on medicine times, food or water (which they told me not to give her), and, it was not 2 days Hospice!, it was 11! I came on this forum because my friend's brother and he are currently living at my home and his brother has rapid progressing dementia and autism, which I now understand can be part of acquiring dementia. I was seeking some insight for my friend as to where we were at, as there has been a recent rapid decline. What I found here was sanity, hard and great memories, a big bunch of the truest love, and so much more. It has helped me understand better where my mom was at when I was trying so hard to keep her with me and she "rose to the occasion" frequently which was delightful and frustrating, when I thought I was losing my mind, and now being able to help my friend and his brother better, and share this forum with him. I just want to thank all of you so much for sharing. I also wanted to say something a dear friend who has opened her home to those with dementia told me that helped me big time! Sometimes a person with dementia with tell you one thing, and 5 minutes later tell, oh so convincingly, to someone else something entirely different. Oh can this make for craziness and frustration. She told me that a person with dementia are, in each moment, only and clearly right there. And each moment can be entirely different. They are not lying. They are just remembering or truth-ing the best they can right then. This help me a super great deal with my mom and I hope it can also be of help to someone else. My sister and I were quite estranged from this, and still it hasn't all repaired. It is good to have some understanding as to why. God Bless You All. PS, I would also not tell my Dad that Mom was gone. Given what I now know, he would have just relived it every time. Their moments are fleeting and that is all they have.
My mom would often ask about her mom and dad and I would tell them they were in the kitchen (they cooked together a lot) and she would be ok. As her disease progressed and she got more afraid, she began to ask over and over and even though this appeased her for a long time, she finally said "They are not in there, are they?" and I just looked at her. She knew something was "off" and then she said "They are gone, aren't they?" and I just nodded. She cried and cried and it broke my heart because she loved them so. So many heartbreaking moments... But I kept her believing for a long time.
My mom would often ask about her mom and dad and I would tell them they were in the kitchen (they cooked together a lot) and she would be ok. As her disease progressed and she got more afraid, she began to ask over and over and even though this appeased her for a long time, she finally said "They are not in there, are they?" and I just looked at her. She knew something was "off" and then she said "They are gone, aren't they?" and I just nodded. She cried and cried and it broke my heart because she loved them so. So many heartbreaking moments... But I kept her believing for a long time.
My mother keeps asking for all of her deceased relatives. Of course , we lie, since it seems to us that she thinks she is a young person. Sometimes she asks for the baby, only to realize that the baby was her sister, 7 years younger than my mom, who also passed away several years ago. Last year we mentioned that a hurricane was coming our way, and she became very distraught begging us to go and get her mother. We had to promise her that, indeed her mother was being rescued. The sad thing is that she does not know who we, her children, are. Thanks for allowing me to share.
Mil lives with us and asks about husband who died 2 years ago. At first we told her he had died but everytime we did it was like the first time she ever heard it and cried excessively. So then we tried 'you know Dad. He's always busy.' And that worked for awhile. Now she accepts well the answer 'He's busy building a beautiful home for the two of you (in heaven?) and when it's done, he will come get you and take you with him.' She likes this answer best! It satisfies her and can be said with some sincerity due to our religious beliefs.
No .look it this way babies dont know everything you tell them if its true or not.same way with alzheimers and demantia. My husband would tell me he wants to go see his mother i would tell him shes asleep.he got demantia very early in age 58 yrs. Old..
09/27/ 2017) I have the same "problem", as it were. Same conditions .... My wife's Mother is long dead ... her Father too. But she still wants to go back to see them .... 1000 (yes 1000 miles) from where we live (Houston TX v.. Southwest VA.).
I tried playing along for a while but that just prolonged her fantasy. And against my nature. So I decided to go the "get tough" route. "Your parents are dead." Harsh, I know. Now it is leading to more confrontations and anger. Still, I am hopeful that her "accepting" reality will help her get to her serenity. I know there is no cure.
My pain is we have a beautiful Daughter ..... and Grand-daughter ...they're frightened of my wife ... and won't come near us ..
But my wife and I have know each other for 50 years... maybe more .. My problem is I have never encountered such helplessness in my life.
My name is Tony Frye .... email frye @vt.edu .. maybe Freedom is just another word for nothing left to lose.....
My Mother-in-law says, "Where's Momma?" So I respond, "She's in Western Illionois.". (I don't complete the sentence with...."where her grave is!"). She also says, "I can't eat this food (in the Nursing home careteria) because we don't have enough to offer our guests that showed up unexpectedly!" I respond with, "I just talked to your husband, and he says he shot a deer this afternoon! You can eat, cause there's plenty of meat in the back, since he just shot that buck!" She laughs, and starts to eat! Truth is, he did say he just shot a deer.... They're both living in 1920!
You must get used to using the "therapeutic lie", as your loved one's condition worsens. The reading I have done and the experiences I am having tells me that it is better to fabricate some of life's realities to help the person you love to feel comfortable. Some are "big" lies and some are small, and I realize that it is very hard to do this, and it brought many private tears to me because we never ever had any secrets or lies between us. But now that has changed-but only to save him pain. And sometimes the lie has to be told over and over again. I have adjusted to this and I see the wisdom in it now.
My pat answer when asked, "where's Momma & Daddy?" I always say the name of the town where they are buried. That's the absolute truth... "They are in Harrisburg." This answer always calms the dementia patient, and relieves me from having to lie in order to satisfy them!
tell him she's out somewhere or sleeping, I could never tell anybody an outright lie I'd choke, but have learnd to tell the truth as I see fit to tell it at the present time.
My Mom just recently passed away. During the last year of her life, she was under the care of our local hospice. They helped her tremendously, but they also offered classes to caregivers of hospice patients. My husband and I brought this up in class and were given some great suggestions. When Mom would ask where someone was, we would just say they had to run an errand. If she asked how long they would be gone, we would say we weren't sure, but we could tell she must really miss them since she was asking about them so much. Then we would ask her about some of her favorite memories of that person. It really WAS good to bring ourselves into HER reality. We learned that trying to force her into OUR reality could be cruel in many ways. One other piece of information we found valuable was how to handle it if your loved one doesn't recognize you. Should you correct them? Again, many times it would be very upsetting for them. You have to remember that you're visiting to make THEM feel good; NOT to feed your own ego. My Mom asked me once where her daughter was. Of course I wanted to say, "I'M YOUR DAUGHTER MOM!" But instead I said, "I saw her a few minutes ago and I know she will be in to see you any minute now; she loves you very much." Mom beamed and said, "That's exactly what I thought!"
Grandma lives w us & same thing happens when she asks about deceased husband. She experiences 'fresh grief' everytime! I felt bad about lying but worse about causing grief. So we finally found a good solution. We tell her he is off 'preparing a new home for them and when it is ready for her - he will come get her.' She is delighted w this answer & grateful to know where he is and why he is t with her right now. Answer doesn't conflict w our Christian beliefs as we do believe he is in heaven & when she passes he will be there to greet her, thus he will in effect 'come get her'. It doesn't feel like lying but keeps her content! 🙂
Jogarfield, I'm sorry for the passing of your mom. I'm glad that hospice helped her and you. (We've got quite the "debate" going on about hospice on another thread.) I'm a part time hospice nurse and I've found that all of my patients have benefited from the care/information and after care/grief counseling that my hospice provides.
You bring up a valuable point. We can't and shouldn't force the demented back into our world. They can't come back. It's so much more comforting for them if we don't choke them with the truth. At this point, we need to keep them peaceful in their world.
Even though I'm a Christian, I have no trouble "fibbing" to mother because the truth made her anxious, confused and angry. That, in turn, caused bad behavior on her part (hitting, screaming, etc.) which upset most of the day. I felt like I was doing her a great dis-service with the truth and not showing her compassion. I don't believe Jesus is going to count my "fibs" against me, as He is merciful and understands mother is mentally incapacitated. (just my interpretation).
My mother also doesn't recognize me as her daughter and frequently asks about "her". Sometimes she wants her to visit and other times she says she hates her! I play it by ear as to whatever the "feeling of the day" is. I have told her before that I am her daughter and she gets very confused, denies it, then forgets a few minutes later and asks where her daughter is. It's just better if I acclimate to her world.
DON'T listen to the post by 'fisherman' below. Wow, thats cruel. Alzheimer's/dementia sufferers don't deal with saying their loved ones "are dead" if they've already known the first time it actually happened. They don't remember their loved ones died in the later stages. They grieve every single time as if its the first time they heard it if you keep saying 'they died". Its selfish to tell yourself your going to do 'tough love' and tell them "their dead" period every time they ask just because your tired of saying something else, or think your lying. Its selfish to do that and down right cruel to just say 'so sorry but they died'.......EXCEPT, my dad's brother died during the time my dad was about in stage 6 Alzheimers so my mom took him into his room, just her and him, and she told dad his brother had just passed away, but after that it was not mentioned again. Since it had just happened, she wanted to tell him the truth, but just that once. My dad was 82 in stage 5 Alz., when he would say about his deceased parents 'is mom and dad coming to visit?" .... We would just say he would see them soon and they couldn't wait to see him. He was fine with that, and within minutes he would forget he asked. We repeated that on and off for years, and he was always just fine with that answer. It was true because he passed away 3 yrs ago, and he is with them now, and even though he had Alzheimers for 11 yrs, we made those years as happy as we could, and never once answered and said his parents were dead. Its too stressful on them and they don't understand, and they won't get used to it, or deal with it. Just don't ever say it. They passed away years before dad got Alzheimers and he grieved the natural process, but when he got terminally ill, and forgot, we never repeated to him that his mom and dad had died. We just told a nicer pleasant answer that was true. Its called loving compassion, and God would agree too.
Sometimes a protective "fibblet" better than harsh reality. To say "she is not here right now" or maybe that she is "resting"" or other variations the do not express that she is now dead. So difficult for the demented person to hear painful news over and over! He won't remember and there is no benefit to keep reminding him
I always use a distraction tactic. Simply change the subject quickly. Or have something on hand to hand him, some type of item, new shirt, pajamas or maybe reminiscing on pictures that are in different subjects. Distraction is a great tool. Works for me MANY times.
Your husband has alzheimers. So he doesn't remember asking you and asks again. Think of a long extended trip she took at some point in her life that he would recall and use that. We've told our mom certain people moved away instead of died. She doesn't ask anymore. Also, if he enjoys music, gospel, whatever, play a lot of it. Youtube has great videos of their era. I use Gaither vocal band for mom and she sings along, etc. Occupies the mind. Check out a documentary on youtube Alive Inside. Shocking, tear jerking, and food for thought.
My parents were married for 61 years. My mother was diagnosed with Alzheimer's 6 years ago. My Dad passed away this past August. They were in an assisted living home together for a couple of months before he died. he was dying when they went in. He was trying to help me out because he knew that caring for her would be very hard as I am disasbled myself. We took care of her together until he had a heart attack in May. It took a month or so for her to realize that he is gone. He died in the bed next to her. She went through the same problem, forgetting and then she suddenly realized on her own that he was gone. She doesn't remember the details of his death (in fact she has quite a fantasy going about it all), but she does understand that he is gone and is grieving. It's so sad. Since my Dad died, two of her sisters died. There is one more who is also very near death. My sister and I decided not to tell her about it. She loves them, but they live thousands of miles away and it seems that she never thinks of them. We felt like it would be too much for her to handle. Not sure it we ever will.
The only family members my Mom asks about are my sister and my brothers. One of my brothers is missing. The last we heard of him he was in a homeless shelter. We tried to keep in touch with him, but he's lost to us again. She asks about him often. I just tell her that he's living in the last town that we knew he was in. She'll say "Oh, he must have a job there" and then just drops it. He was living with them for a year before they went into the assisted living facility. He left about a week before they went in. I live near her, all my siblings live out of state. My sister calls her often, writes and sends gifts. My mother never remembers when anyone calls her, even me. Sometimes I take her out to lunch, or I'll go and play games with her or help her write letters to my sister.
My mother went ballistic when she heard her sisters talk about "when mom died" She was in shock,,,just like when it really happened... Of course I lied.. I told her it was not their mother that they were talking about and she was sooooooo relieved. When she wanted to know where her mother was, I told her she was out buying a new hat..My grandmother loved hats. I think we have to keep them as happy as we can..reality and truth can devistate them...In the place they are in: their moms and dads are alive . Talk about something funny their mom did,,or a holiday you all celebrated ..Bring out the old pictures if you can...Making our mother happy is our best medication.. Because we thought she was back in the 40s or 50s we bought tons of old movies... She could watch Fred Astair and Gingers Rogers over and over and it makes her so happy...She sings along sometimes....These are her best days......She sleeps better too...
The kind of dementia my Mother had (LBD) she didn't exhibit much emotion. She would ask about her parents a lot, how they are, but she never asked about my father, and he had passed on and never came to see her anymore. But she never asked about him. Maybe she was living her childhood before she met him. I told her that her mom and dad were fine and they send their love. She would forget what I said right away.
Never LIE!! Change the Subject!! Re direct their attention elsewhere.......If their condition is that bad, they obviously can't stay on topic for long!! Lying will make you liar in your dayly pattern. Which is part of the evilness of this disease. To turn us into Guilt Ridden, Zombie Liars & cling to weird coping stratagies that aren't part of REALITY!! Prayer helps immensely!!
I strongly agree with never lying and just go ahead and change the topic. If he persists he's going to have to grow up and just realize his mom is gone. We're all going to have to face death someday even the death of a loved one so it's time he put his big boy pants on and deals with it if he really wants to know. Just tell him the truth if he won't accept the fact or changing the topic. Even my foster dad with dementia knew that he lost his wife and his daughter and was mature enough to be able to accept that. Even in his mental decline he was a big enough person to be mature enough over the deaths of his wife and daughter. In fact that's not all! I think he knew he'd never see me again though he couldn't tell me why and this was before I knew I was banned from visiting by his guardian for reporting the abuse I witnessed in the nursing home against another resident. He looked at my elderly friend who was with me that day and looked him right in the eye and told him to take good care of me and that was the last time I ever saw my foster dad because someone at the nursing home tried to pull me aside alone apart from everyone but I told them I would not go aside alone without a witness and this person let my elderly friend be with me for moral support since he already knew everything that was going on, I told him everything even about the abuse I saw at the nursing home. He already knew everything before the guardian suddenly decided to bar me from visiting my foster dad just because I reported abuse to the head department of nursing. I'm one of those kinds of people who happens to be an abuse survivor myself and if I see someone being abused I'm speaking up and I won't back down, even if I must report it to the higher ups.
Can we make a distinction bet/ "lies" said bet/ 2 sane people and therapeutic actions to take care of a demented people. A million mild things are said to a person under care like "let's go to your room to watch TV" when you're actually going to change their diaper. That happens all day long. How about if his wife is in Heaven (we hope so); describe some aspect of Heaven that will soothe the demented person. Making them sad or agitated is really counter productive. I learned so much from watching the ALZ nurses. So patient and soothing. Betsey
I've never thought of myself as a "Guilt Ridden, Zombie Liar who clings to weird coping stratagies that aren't part of REALITY!" 👻 😜 👽 🤖 💀 😈 🐍 👹
If I can prevent my demented 95 year old mother from being sad, crying or having any other negative emotion, I'll lie from here to the moon. Her mental wellbeing means the most. IMO, we should make their last days as comfortable (mentally and physically) as possible.
Uua-ha-ha! I'm a Zombie Liar, I'm a Zombie Liar-Aaaahh! 🙀
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I also wanted to say something a dear friend who has opened her home to those with dementia told me that helped me big time! Sometimes a person with dementia with tell you one thing, and 5 minutes later tell, oh so convincingly, to someone else something entirely different. Oh can this make for craziness and frustration. She told me that a person with dementia are, in each moment, only and clearly right there. And each moment can be entirely different. They are not lying. They are just remembering or truth-ing the best they can right then. This help me a super great deal with my mom and I hope it can also be of help to someone else. My sister and I were quite estranged from this, and still it hasn't all repaired. It is good to have some understanding as to why. God Bless You All. PS, I would also not tell my Dad that Mom was gone. Given what I now know, he would have just relived it every time. Their moments are fleeting and that is all they have.
I tried playing along for a while but that just prolonged her fantasy. And against my nature. So I decided to go the "get tough" route. "Your parents are dead." Harsh, I know. Now it is leading to more confrontations and anger. Still, I am hopeful that her "accepting" reality will help her get to her serenity. I know there is no cure.
My pain is we have a beautiful Daughter ..... and Grand-daughter ...they're frightened of my wife ... and won't come near us ..
But my wife and I have know each other for 50 years... maybe more ..
My problem is I have never encountered such helplessness in my life.
My name is Tony Frye .... email frye @vt.edu .. maybe Freedom is just another word for nothing left to lose.....
So I respond, "She's in Western Illionois.". (I don't complete the sentence with...."where her grave is!").
She also says, "I can't eat this food (in the Nursing home careteria) because we don't have enough to offer our guests that showed up unexpectedly!"
I respond with, "I just talked to your husband, and he says he shot a deer this afternoon! You can eat, cause there's plenty of meat in the back, since he just shot that buck!"
She laughs, and starts to eat!
Truth is, he did say he just shot a deer.... They're both living in 1920!
I'm sorry for the passing of your mom. I'm glad that hospice helped her and you. (We've got quite the "debate" going on about hospice on another thread.) I'm a part time hospice nurse and I've found that all of my patients have benefited from the care/information and after care/grief counseling that my hospice provides.
You bring up a valuable point. We can't and shouldn't force the demented back into our world. They can't come back. It's so much more comforting for them if we don't choke them with the truth. At this point, we need to keep them peaceful in their world.
Even though I'm a Christian, I have no trouble "fibbing" to mother because the truth made her anxious, confused and angry. That, in turn, caused bad behavior on her part (hitting, screaming, etc.) which upset most of the day. I felt like I was doing her a great dis-service with the truth and not showing her compassion. I don't believe Jesus is going to count my "fibs" against me, as He is merciful and understands mother is mentally incapacitated. (just my interpretation).
My mother also doesn't recognize me as her daughter and frequently asks about "her". Sometimes she wants her to visit and other times she says she hates her! I play it by ear as to whatever the "feeling of the day" is. I have told her before that I am her daughter and she gets very confused, denies it, then forgets a few minutes later and asks where her daughter is. It's just better if I acclimate to her world.
The whole thing is so darn sad. :(
Of course I lied.. I told her it was not their mother that they were talking about and she was sooooooo relieved. When she wanted to know where her mother was, I told her she was out buying a new hat..My grandmother loved hats.
I think we have to keep them as happy as we can..reality and truth can devistate them...In the place they are in: their moms and dads are alive . Talk about something funny their mom did,,or a holiday you all celebrated ..Bring out the old pictures if you can...Making our mother happy is our best medication..
Because we thought she was back in the 40s or 50s we bought tons of old movies... She could watch Fred Astair and Gingers Rogers over and over and it makes her so happy...She sings along sometimes....These are her best days......She sleeps better too...
Lying will make you liar in your dayly pattern. Which is part of the evilness of this disease. To turn us into Guilt Ridden, Zombie Liars & cling to weird coping stratagies that aren't part of REALITY!! Prayer helps immensely!!
Betsey
👻 😜 👽 🤖 💀 😈 🐍 👹
If I can prevent my demented 95 year old mother from being sad, crying or having any other negative emotion, I'll lie from here to the moon. Her mental wellbeing means the most. IMO, we should make their last days as comfortable (mentally and physically) as possible.
Uua-ha-ha! I'm a Zombie Liar, I'm a Zombie Liar-Aaaahh! 🙀