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?
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.
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.
Perhaps you can get more focused help from the Lewy Body Dementia Association
https://www.lbda.org/#
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.
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.
Amazing
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.
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
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!
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.
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.
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.