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My mother is 94, has a physical handicap keeping one knee from bending. Looking back at certain physical signs, I suspected she had Parkinson's or LBD for a while; small shuffling steps, haunched stance, movement problems, freezing during walking. So I took her to a neurologist a couple of years ago for an "expert" opinion. He did what I guess is usual procedure to ascertain her condition. But after all was said and done, he said that she may have some Parkinsonian symptoms but didn't say definitively. But if things get worse to come back.


Two years later, the typical Parkinson's tremors began and worsened. The hallucinations and delusions (which had happened before but only occasionally) were getting more frequent. Now they are almost daily!


The hallucinations and delusions that are really bothersome--to me more than her. Playing along isn't too bad--my husband does that better than me. But other times I just can't handle the things she comes up with. She often thinks she is pregnant. She thinks that the people on TV are real and can hear her; she talks to them but wonders why they don't acknowledge her. She wonders what the lump on her belly is (it's her Depends), but when I explain that to her, she just stares at me like she doesn't understand. I get a lot of blank stares from her, she just doesn't seem to understand much anymore. Normal for Parkinson's?


The delusions are hard to handle. She's thought we implanted a machine in her and asked to see a doctor about "her condition". When we "played along" and said we'd have Dr. X (who had passed away 8 years prior) come to examine her she knew he was dead but continued with the rest of her belief that a machine was implanted in her. Is this typical of delusions? Believing something is happening when it really isn't while at the same time knowing certain other things are for real? In one sentence she says something bizarre, like she's pregnant, and the next sentence she making complete sense. How do I handle this?


Then there's the "I don't know how to" thing. She tells me she doesn't know how to sit up in bed, which way to move left, right, or how it sit down. She tells me she needs to use the bathroom but when I get her up from her chair she asks me where she's going and doesn't know where the bathroom is.


There's more, like when she wakes up in the middle of the night and calls out to me by name, or says "hello" over and over and over and over and over...you get the picture. She doesn't stop until I go and inquire what she wants. Her usual response when I get there is "hi, it's nice to see you, how are you?" More times than not there is nothing she wants, or just doesn't remember why she was so frantically calling out. As you can imagine this is not fun at 2:00 in the AM! She is relentless when she wants something. Like some water that is always by her side but says she doesn't know it's there, so instead she calls for help over and over... Other times she tries to get up (usually from bed) and get "something" on her own which leads to her falling. I put a bed rail to prevent her from falling out of bed, but she has circumvented that a couple of times. She even tries to climb out of her lift chair. Funny thing about that chair, she's had it for about 5 years and from the beginning couldn't learn how to use the up down control. However, now it seems that when she's having an "episode" she can use that control to get up without problem.


I took her back to the neurologist this year because things were getting worse, that the hallucinations and delusions were worse along with moving about. He said if she's not upset by them then it's OK. HUH? He put her on L-dopa. It only helps with tremors.


Advancing Parkinson's and her handicap is more problematic. Getting her toileted is hardest, especially when she's having "off" days. Some days she sleeps all day. Other nights she's up. Some afternoon's she seems like she's in a trance (sundowning?). SNF is out.


Help?

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Question the neurologist about the side effects of Carbodopa Levodopa. For people with LDB, it can make the hallucinations much worse. It helps retard mild physical symptoms in some patients, but there can be a real quality of life trade off with psychological decline. The doctor is not in a position to know where that balance is.

When my dad’s hallucinations began, I wish we’d had a better understanding of the drug reactions and recognized the connection sooner. Weaning him off of the Carbodopa Levodopa helped him immensely. That might not be your mother’s issue, but my experience recommends considering all options to reduce hallucinations.

That said, your mother is probably in for a difficult time. You may be able to lessen the severity of the hallucinations your mother is currently suffering, but expect them to worsen over time. There is no reasoning them away. While the doctor’s advice sounds callus, I’d give almost anything if dad had a few pleasant hallucinations we could go along with rather than to try to comfort him again from the horrors his mind has locked him into.

For both your sakes, consider that a team of professionals in a memory care facility designed specifically for your mother’s needs may provide better care for her than the most devoted family.
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Reply to Tunfet
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Your mother needs round the clock care, and it’s more than what you and your husband can do. It’s more than ANY two people alone can do!

If you’re refusing to even consider a SNF, stop and think about your reasons why not. Guilt? Feeling like you let her down? That you let yourself down? While it’s understandable to feel that way, it really isn’t the case at all. You two doing it all is going to end up unsafe for mother and detrimental to you and probably your husband too. Your body could give out before hers does... and I don’t say that as a joke.
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Reply to LoopyLoo
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Prayers sent.
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Reply to Llamalover47
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You say SNF is out but have you looked at MC facilities? If she's still at home with you she apparently wouldn't need an SNF. How long do you think you can get up at 2 AM? How much longer can her hallucinations and delusions upset you? How much longer will you be able to transfer her from chair to bed to toilet? Her neuro said her delusions are OK if they don't upset HER. He's right. You have to adjust to them. Did you tell the neuro the difficulty you're having with them? You need to continue to validate her world as hard as that can be. If her delusions begin to be frightening for her, then the drs intervention is needed. I guess thinking one is pregnant isn't that unusual. One day while my wife was lying on the couch she yelled out, "the baby's coming, the babies coming". At 73??!! Do the best you can to play into it. Educate yourself about dementia and Parkinson's disease. There are many websites and books that can help you better understand and deal with mom's disease.
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Reply to sjplegacy
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It appears your mother has advanced in her disease process to the point that she needs round the clock caregiver. if you wish to continue having mom in your home, Sorry to bear bad new, but her delusions and problems are not going to get better but worse over time. You don't have to believe what she says in her delusions, but just be kind and make sure her needs are met. I suggest you hire a 'sitter" for her at night who will be awake all night and will meet her "late night" needs. I would also suggest that she have person(s) who can care for her a couple hours/days a week so you and your hubby have a break. As long as she is not violent, keeping her at home should not be a problem as long as you recognize that the "delusional world" is now her reality.

I would also suggest that your doctor write 2 consults - 1 for a neurologist who can manage her LBD better than her primary care doctor and 1 for a geriatric psychiatrist to help manage behavior problems. Unfortunately, people with advanced LBD can become so frustrated or anxious that they become violent. A psychiatrist can help if those symptoms emerge. Many folks with LBD are managed very successfully in a long term residential facility. Please keep that as an option if caring for your mother gets to be too difficult for you and your husband.
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Reply to Taarna
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As long as she isn't "upset" by the hallucinations and delusions? I would say that if she is saying things that are contradictory or that cannot be "massaged" by "going into her world" than the issue is more complicated than what the neurologist realizes (or is willing to acknowledge). She might not be upset herself, but if this is causing problems for people around her, or even the greater community, then it shouldn't be swept under the rug. Perhaps another specialist should be consulted, such as a geriatric psychiatrist.

On a lighter note, my paternal grandmother used to dress up to watch Art Linkletter on TV, and my father once mentioned that she believed people on TV could see her. However, this was almost 60 years ago, she was an immigrant from eastern Europe who only spoke some broken English, and didn't get out and about much, so I suspect this might have been due to sheer ignorance concerning the technology rather than dementia (a degree of which she eventually developed).

There is a difference between truly "harmless" delusions, and those that don't upset the patient but may have serious consequences!
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NeedHelpWithMom Nov 17, 2020
That’s a name I haven’t heard in awhile! I remember watching Art Linkletter as a young child.
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Please try CBD OIL. 1000 MG. UNDER TOUNGE. SAFE NO SIDE EFFECTS
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Reply to beeje7623
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My mom has MS, sometimes she gets hallucination when she has a UTI, with absolutely NO other symptom. Her nursing home never thought about testing her for it until I suggested it. It could easily not be what is wrong, but could she get checked for one just to see?
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Reply to ebeach1
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All above advice really good. I think you need the care more now . Look at some small good care homes or get a lot help !!
my husband has lbd and when he hallucinates I play along then change subject ... you can never convince them it’s not real.
the l-dopa stuff for Parkinson’s can make hallucinations worse !!! !Sounds like she has LBD check out their website given above . They’re some meds a good gerontologist or neurologist could recommend but honestly if she’s not agitated or bothered you shouldn’t be either.
most important thing you can do is keep her comfortable.
It takes a village !!!
good luck g-d bless
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Reply to Helenn
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I would not play along with the delusions or the halucinations. My mother had LBD and she had some disturbing times, she could also be very persistant. We were told not to challenge but if you participate I think it all becomes more confusing and you have more chance of getting her back on track with distraction and normal conversations.
My mother's delusions changed from day to day.
I would get her reassessed as the conditions advances rapidly - not that there is a medication to halt the progress or ease the distress. If she is not distressed you are on a winner.
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Reply to wiseowl
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It's 3am, and I'm up because my mom is sundowning, and keeps getting out of bed every 20 minutes.

She has many of the same delusions and hallucinations as your mom: she thinks the people in the tv can see her, she thinks people are in the house. She doesn't always know who I am. Yet, she speaks "normally" to other people.

I have no advice. I'm going through the same thing as you are.
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beeje7623 Nov 17, 2020
Please try 1000 mg. Flavored CBD OIL. Under the tongue, wait 45 min. Safe, no side effects .
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Hi Takingcare
You sound very tired. I’m glad your husband is helping you.
I don’t know how you manage the night time interruptions. I’m a zombie without sleep. Some of the behavior you mention is similar to other dementias.
My DH aunt called me to come help her today. She handed me her telephone and wanted me to turn her tv on.

I have a family member who has schizophrenia. She has delusions that are upsetting to her. She sounds perfectly normal and then she will confide that she knows where the Lindberg baby is.
She has auditory delusions. Intercepts messages meant for the police so she calls the police to give them pointers. Sigh
Thinks there is a chip implanted in her teeth by the dentist. Big conspiracy. She calls the FBI to help them out as well.
Brains are fascinating aren’t they?
Try calling hospice to evaluate your mom. Medicare seems to have new guidelines these days. I was told (regarding aunt) that if their condition is not reversible, they can qualify for hospice. This would give you another layer of medical help. An aide to bathe her, supplies, her dementia meds. All this is covered by Medicare. Call a couple of them and discuss and compare what they offer.
AND they offer up to five days respite! You could get some rest.
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Reply to 97yroldmom
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Not all doctors are sympathetic to the needs of the caregiver and even those who should be intimately aware of the possible treatments for LBD can't always be counted on to put in the time or effort to find suitable options, IMO just because something is difficult to treat doesn't mean you don't at least make the attempt. Do your own research but be aware that some medications can be dangerous in LBD.

Perhaps you can get more focused help from the Lewy Body Dementia Association
https://www.lbda.org/#
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Reply to cwillie
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I don't honestly believe there is anything that can be done about the hallucinations. In my bro's case he was in early stages of Lewy's and he was AWARE that his hallucinations were not real. We could discuss them. We were both fascinated by how real they were. He died before he could descend further down that rabbit hole. If there is a cure for them I don't know about it. I think on some level they are only a part of all you are now dealing with. Is there any point at which you would accept/believe that Mom should be in memory care so that you can reclaim of life of some kind. I cannot imagine, quite honestly-- and I was a nurse-- going through all you are.
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Reply to AlvaDeer
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NeedHelpWithMom Nov 17, 2020
Almost like a lucid dream. Dreaming while awake. So interesting that your brother was aware of it.

When my friend was having her hysterectomy, she had a reaction to pain meds, her hallucinations were about being in a field of pink tulips!

I asked her nurse to come to her room when she invited me to pick the beautiful tulips with her.
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Why is a SNF off the table? Once your sleep starts getting interrupted regularly, your ability to provide 24/7 care gets diminished. Can you look into overnight care so you can get some uninterrupted sleep?

There were some pilot programs in my area that offered overnight "daycare" for people who had their days and nights mixed up. But they've been put on hold because of CoVid. It's a great idea, though. The lack of sleep really weakens the caregiver.

Teepa Snow has some good videos on Youtube about how to handle delusions. And I found some good advice about how to talk to someone who has delusions in a book about schizophrenia called "I'm not sick I don't need help" by Xavier Amador.

I'm sure others will have advice for you too.
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