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She lives in her own home with my dad. She was only diagnosed with dementia six months ago and she’s already hallucinating. She always angry. We don’t know what to do. Is there anything get can do?
My sister is in an assisted living because our younger sister can’t deal with her delusions and falling all the time. They’re both unmarried and have conveniently lived together for maybe 10 years. If the older sister stays with the younger sister, The younger sister won’t be able to leave unless someone else comes over to sit with the older sister. So we put the older one in s very nice assisted living — and she hates our guts and doesn’t know why she’s in there! I visited yesterday and it wasn’t there 5 minutes. It’s continual arguing — she’s on meds but they’re being crushed secretly because she spits them out . And she’s pretty much there when on them. She can’t drive and her daughter had to sell her car to help pay to get her into this facility — and she’s really really mad about that! She thinks she’s ‘fine’ to drive and go home! To my younger sisters home. It’s s fight if you call or visit. We are trying to financial help form Medicaid because it takes 3 much older sisters to keep her there — our eggs nest for the day we might end up there! It’s been a stressful mess! We wonder if the meds mske her mean or if she’s just mean and angry because she hates it there — this week! She’s loved it the last few months! 🤷♀️🤷♀️🤷♀️. None of us want to deal with her ugliness toward us! It’s awful and we have guilt
my dad was in facilities and always wanted to go home. It really broke my heart to not be able to take him back to his home. One night my mom and I were there and said we were going, he asked to come with We said no, and he then laughed, like we were kidding. One time he said I just want to go home, upstairs, where I belong. We were puzzled as the place did not have an upstairs . So we thought either the upstairs in the farm house he grew up in or even to the man upstairs.
Anyway, what I tried, which worked to some degree, was say, we will take you home tomorrow. It was a lie of course, but it seemed to pacify him and reduce his anxiety for that moment. The next day of course he didnt remember the conversation. He would ask again, and we would do the same thing again. I felt bad lying but I felt it was for the greater good of reducing his anxiety.
You may want to try this. It worked for my neighbor. Tell your Mom you're taking her home. Drive her around for a bit and "return home." Does she recognize your dad? If so, have him stay home to greet her. It may or may not work. Best wishes.
“Home” could mean childhood home but when I drove my mom there & took a picture to keep sharing with her I discovered it is more the sense of security, love & warmth she felt being cared for from her parents. She’s asking for loving reassurance that everything is ok. I’d distract her with Let’s fix an ice cream cone!, or Let’s go sit on the porch, or anything she likes to do. Regarding the anger, having taken care of my mother in my home for 12 yrs now with dementia (she is in the end stages now), I learned the anger comes from frustration at not being able to control your own mind. They know they’re slipping, they can’t get a grasp on it, they’re scared & they’re angry that they can’t do anything about it. Redirecting with a positive change of subject works miracles. Keeping them busy with car excursions or walking a dog, all these things help them forget the internal fight they're enduring. It’s a very sad disease. Patience & empathy are the key.
Unfortunately there isn't much you can do with this fixation. Who can know what "home" means to her now. I would tell her that you are sorry she is suffering. Don't expect her to be happy or rational. She is facing down terrible losses now, and there's nothing good coming down the line. This is worth grieving and worth being unhappy about.
Keep your visits frequent and short for a while. When there is a lot of anger, and you cannot re-direct her in any way, simply let her know your visit isn't making her happy and you will leave, but will return when she's feeling better. Just sometimes this is a sort of Pavlovian training that can work (but not often).
Whomever is POA should discuss the severity of these hallucinations with the doctor. You want to know that nothing is being missed. There should be at least a urinalysis run to be certain that nothing is being missed in terms of this sudden change. And discuss the possibility of medications; sometimes a low dose anti-depressant can help; other times it makes it worse. But worth exploration with the doctors.
Get all your legal documents in order - so you can handle everything ... if not already managed.
Get her into a facility ASAP.
Talk to MD about medication / adjustment.
Until she is placed, get caregiver in 24/7. She needs this care (and you do not mention anything about your dad and his condition / ability to 'assist' / care for her, which I presume he cannot).
You do not tell us anything about care (providers) - you? family? caregivers?
She will be on a never-ending spiral of fixation. You need to take breaks / get caregivers in there.
Understand her angry is partly / mostly from the dementia. Although a person's (prior) personality / traits can come through, her brain chemistry has changed and most, if not all, of what she expresses is due to her brain changes / cells dying AND medication. It can take some time to get medication adjusted correctly. Do ask MD about.
Be compassionate. Remember, this is hard for her - from her perspective and brain. She is confused and scared, esp hallucinating.
If her memory is really bad, tell her that you are going tomorrow. She will forget and ask again. It is far better to go to her brain than try to reason with her.
You do not reason with a person with dementia (as) It is not possible. They cannot comprehend 'logic.' Logic keeps a 'conversation' (non conversation 'going' creating ongoing frustration and stress for everyone).
The best one can do is keep a person as emotionally even and content as possible. A person with dementia may / likely DO get: compassion respect tone of voice (slow, caring) expressions (smiling, caring) touch (holding their hand, touching their shoulder / gentle contact
With her broken brain, she no longer knows that she is home and nothing you can say will be able to change that. While I hate meds, I would suggest that you talk to her doctor for something that can calm her down a bit. She obviously is not very happy and it quite agitated to be obsessing about this. I've heard many dementia patients benefit from a small dose of ativan. I know that when/if my mom reaches this stage of dementia, I will be asking for exactly what I have mentioned. There's no need for them to be so upset all the time!
Read the booklet lea has suggested. It's very helpful. Meet your mom where she is reality wise and do not try to persuade her that she is home or anything like that. Just give some vague bland response and change the subject.
Part of the disease. You might ask her where home is just to see 'where' she's at in her mind. If she says "I don't know", then just assure her she's home. Direct her attention to anything that she knows belongs to her..the bed, clothes in closet, etc.
If that doesn't work, don't even bother saying "You are home" because in her broken brain, she's not. She's somewhere else. Or her surrounding just no longer look familiar. Deflect with any other topic all together.
Take her out to the front porch for a short period. Make up a story...did I tell you about my friend who went to XX for vacation?
Bostonsnana: Part of the dementia brain is reverting back in time when your mother was a much younger individual. Fixation occurs and a desire to return to, quite possibly, their childhood home as they perceive themselves to be 20. You'll have to redirect, e.g. 'the auto to get us there is out of gasoline or in the shop for repairs' or anything else you can conjure.
A couple of things. First make sure she doesn’t have a UTI or something going on, they often cause marked cognitive change. In my mom it is irritability, hallucinations and a real change in personality. She is also affected by dehydration, even when she doesn’t appear dehydrated when she hasn’t had enough water she wakes up from naps or nights sleep talking about swing a strange woman in her room or thinking she has to “go to the other house”. She has sometimes been confused about where she lives, wanting to go home and I tend to play along without feeding the delusion. “Which house do you mean”? Why do you need to go there? I let her talk about it and answer her questions broadly until she typically figures out she was dreaming or something, she slowly comes back to the here and now. I don’t want her frightened by these episodes so I never make a big deal about them I simply let her work her way through it and then laugh with her about it if we can. I often attribute it to her waking up from a very real feeling dream, we have all had that sensation of waking from a dream and having to get your bearings for a few seconds “was that a dream or wasn’t it”…? I know it’s more with her than that and while it can be really frightening and sad for me when this happens because I know it’s her dementia journey not just a vivid dream, I don’t let on to her that it’s sad for me because I don’t want her to feel more depressed or frightened by it than she must already, she can’t do anything about it except talk about it and I want her to feel free and comfortable talking about it, working it through.
My mother says this too. She is waiting to go "home", or to her "other" house. She's very violent about it, she's nasty and unreasonable. The house thing just started. Her dementia has got worse over this last year. Her personality traits more awful than ever. She keeps asking who's house is this. Yet some days she's yelling "this is my house!" She was always horrible but now it's ten fold. We just ignore the house thing. So sorry 😞 😢 it's a terrible ending, I thought it would have been gentle and reminiscing, playing cards and sitting by the fire with a cup of tea! This is purgatory for sure. Have patience it can't last forever. ⚘
This question is typical of many, if not most, posted on this forum. I haven't posted recently because my wife passed recently and I no longer have need to seek help. But, I do have experience going back more than 40 years with elderly/dementia care. The short, but unfortunately sad, answer is 'nothing'. Once dementia begins your loved one is no longer the person you have known previously. My wife had similar issues and usually would just respond "we'll see" or change the subject. It seem cruel but there really is nothing you can do to improve the situation.
Mira Lax makes dementia worse and can cause delusions and hallucinations. If she takes that, consider switching her to Milk of Magnesia.
That one change completely stopped my mother's sundowning, delusions and hallucinations.
A side note - my mother is not on any mind-bending or anti-anxiety drugs either. All she takes is a thyroid pill and one CBD (no THC) gummy before bedtime.
Life isn't easy but I no longer feel like I'm living in a lunatic asylum.
I caution you about passing on such info about the "dangers" of antidepressants and other meds for dementia. The quality of my mother's life was greatly improved with Wellbutrin and she was able to socialize and enjoy life for 7 years she'd have otherwise been miserable without. Same thing with Ativan calming down her extreme Sundowning agitation in late afternoons.
A doctor is the only person who can make such calls, not laymen on a forum.
I found that taking my Mom for a ride "to go home" would help as it distracted her and by the time we arrived back home she somehow realized she was home. Or else forgot why we had even gone for a ride. Patience is key. As my Mom has passed away now I wished I had not have had to work so I could have taken more time to go through old photo albums and possessions with her to distract her.
Old photo albums and possessions sometimes just make them sad or even confused. They don't know who the people are, and no matter how many times you show them the picture and explain it's their mother or son or whatever, it doesn't stick in their brains. So don't have regrets! It might not have turned out as you'd have liked anyway.
Your Mom had Dementia before the actual diagnosis. It does not suddenly appear. It starts very subtly. They are good at showdowning. Its usually sundowning that finally makes family aware that something is wrong. It will progress, sometimes slowly, sometimes fast.
I hope Mom is seeing a Neurologist. A PCP/GP knows a lityle about everything and a lot about nothing. There maybe a medication that Mom can take to help when she gets like this.
When dementia is at play, they regress in time, mentally, back to the place they were living w their parents at that age....the childhood home is the place they're looking to go back to. That's where mom is at now, mentally, thinking her parents are still alive, she's 20, and they're missing her presence at home. There is nothing you can say or do to "correct" this misconception either. It will persist and distracting her is the only solution.
Ativan .5 mg worked well for the Sundowning agitation my mother suffered in late afternoons with dementia. She insisted we were hiding her parents and siblings (All deceased) from her and was quite upset about it. All you can do is treat the agitation since the actual issue is not fixable, obviously.
I suggest you read this 33 of booklet online about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
My wife is demanding the exact same thing - Everyday! She demands that she has to go home to Mom or her Mother will be mad. Ann has been suffering with Dementia for a little over two years, this "going home" request/demand, has just begun about three weeks to a month ago. What you need to be aware of, is that, as has happened with my wife, your Mother may decide to try going home on her own. You need to insure she is not able to leave the house without supervision. My stock response, whenever the daily request to go home is brought up, is that the house is no longer there - it was torn down to make room for a new highway, which, in my case is not a complete fib, that did happen just two blocks from her childhood home. That tale keeps her satisfied for a time, but then she starts again and will, if possible leave on her own. I've have had to get neighbors and police assistance a couple of times to get her home. Now have new alarms and locks that will hopefully prevent future wandering. Good luck, keep her safe. Prevent wandering!
Get a lot of information on dementia. It helps manage your expectations about what you mom can and can't process. This is not something she's choosing to do. Her brain is literally shrinking away, and answers are not going to register the way you want them to.
If she's thinking about her childhood home, maybe you can ask her to share what that was like, talk about it, tell her how nice it sounds.
I'm not above a white lie when dementia gets bad. "Pretty soon" worked well for my grandfather when he asked when his late wife was going to visit him.
I watched that video, very interesting, some good advice. I believe that is a presentation from an organization called "Dementia Careblazers". They apparently have a whole series of help for care takers of Dementia loved ones.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
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APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
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APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
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If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
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This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
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You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
Anyway, what I tried, which worked to some degree, was say, we will take you home tomorrow. It was a lie of course, but it seemed to pacify him and reduce his anxiety for that moment. The next day of course he didnt remember the conversation. He would ask again, and we would do the same thing again. I felt bad lying but I felt it was for the greater good of reducing his anxiety.
Best wishes.
https://youtu.be/tYNxcXLwZjA
It explains what "I want to go home" really means.
Unfortunately there isn't much you can do with this fixation. Who can know what "home" means to her now. I would tell her that you are sorry she is suffering. Don't expect her to be happy or rational. She is facing down terrible losses now, and there's nothing good coming down the line. This is worth grieving and worth being unhappy about.
Keep your visits frequent and short for a while. When there is a lot of anger, and you cannot re-direct her in any way, simply let her know your visit isn't making her happy and you will leave, but will return when she's feeling better. Just sometimes this is a sort of Pavlovian training that can work (but not often).
Whomever is POA should discuss the severity of these hallucinations with the doctor. You want to know that nothing is being missed. There should be at least a urinalysis run to be certain that nothing is being missed in terms of this sudden change.
And discuss the possibility of medications; sometimes a low dose anti-depressant can help; other times it makes it worse. But worth exploration with the doctors.
Good luck.
Get her into a facility ASAP.
Talk to MD about medication / adjustment.
Until she is placed, get caregiver in 24/7. She needs this care (and you do not mention anything about your dad and his condition / ability to 'assist' / care for her, which I presume he cannot).
You do not tell us anything about care (providers) - you? family? caregivers?
She will be on a never-ending spiral of fixation. You need to take breaks / get caregivers in there.
Understand her angry is partly / mostly from the dementia. Although a person's (prior) personality / traits can come through, her brain chemistry has changed and most, if not all, of what she expresses is due to her brain changes / cells dying AND medication. It can take some time to get medication adjusted correctly. Do ask MD about.
Be compassionate. Remember, this is hard for her - from her perspective and brain. She is confused and scared, esp hallucinating.
Gena / Touch Matters
They cannot comprehend 'logic.' Logic keeps a 'conversation' (non conversation 'going' creating ongoing frustration and stress for everyone).
The best one can do is keep a person as emotionally even and content as possible. A person with dementia may / likely DO get:
compassion
respect
tone of voice (slow, caring)
expressions (smiling, caring)
touch (holding their hand, touching their shoulder / gentle contact
Read the booklet lea has suggested. It's very helpful. Meet your mom where she is reality wise and do not try to persuade her that she is home or anything like that. Just give some vague bland response and change the subject.
Best of luck!
If that doesn't work, don't even bother saying "You are home" because in her broken brain, she's not. She's somewhere else. Or her surrounding just no longer look familiar. Deflect with any other topic all together.
Take her out to the front porch for a short period. Make up a story...did I tell you about my friend who went to XX for vacation?
JessT
We just ignore the house thing. So sorry 😞 😢 it's a terrible ending, I thought it would have been gentle and reminiscing, playing cards and sitting by the fire with a cup of tea! This is purgatory for sure. Have patience it can't last forever. ⚘
That one change completely stopped my mother's sundowning, delusions and hallucinations.
A side note - my mother is not on any mind-bending or anti-anxiety drugs either. All she takes is a thyroid pill and one CBD (no THC) gummy before bedtime.
Life isn't easy but I no longer feel like I'm living in a lunatic asylum.
A doctor is the only person who can make such calls, not laymen on a forum.
I hope Mom is seeing a Neurologist. A PCP/GP knows a lityle about everything and a lot about nothing. There maybe a medication that Mom can take to help when she gets like this.
Ativan .5 mg worked well for the Sundowning agitation my mother suffered in late afternoons with dementia. She insisted we were hiding her parents and siblings (All deceased) from her and was quite upset about it. All you can do is treat the agitation since the actual issue is not fixable, obviously.
I suggest you read this 33 of booklet online about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
Wishing you the best of luck with a difficult situation.
If she's thinking about her childhood home, maybe you can ask her to share what that was like, talk about it, tell her how nice it sounds.
I'm not above a white lie when dementia gets bad. "Pretty soon" worked well for my grandfather when he asked when his late wife was going to visit him.
Has your mom needs seen by a geriatric psychiatrist for these symptoms? Sometimes the right meds can make a huge difference.
https://youtu.be/nTCbRUurY1g