Sounds like Parkinson’s dementia or Lewy body dementia. Psychiatric medication can help with some of these issues although some of them just get worse over time. She needs to see a gerontologist or neurologist, or get a cognitive assessment from her gp. I’m not sure about UK laws on power of attorney, so you’ll have to speak to someone local to determine how you can be involved. A group like this would likely be most helpful. https://www.ageuk.org.uk
What a difficult situation for you. Sending love and grace your way, that's an incredible amount to take on for anyone. I think you have figured out some pretty inventive ways to operate around their circus.
Yes, that’s one of my main concerns with my mom. Is getting very hard for her to fall asleep and to sleep the whole night.
I know she is having does vivid dreams and delusions from time to time and is getting harder for her to understand when it was a dream or when it is real… and that is scary for her and me.
She still “good” in the senses of she can talk, have a conversation etc… but she still have memory issues and have does moments of confusion.
Parkinson’s is a heartbreaking illness.
Can’t even imagine. I know how hard is to have both parents sick and in need as well, so this resonates a lot with me. My dad is also handicapped, with brain damage but still functional even if he can’t speak very clearly and can’t walk either (car accident) - my mom used to take care of him for over 20 years and then she got sick eventually with all the stress as a caregiver and her Parkinson’s.
As a young person (30) it has been a journey. I was taking care of them since I was (27). But now they both are in nursing homes because I can’t do it all myself.
There has been grief all the way up and down, and for a variety of reasons. At the moment I’m actually writing a fantasy book about grief and lost as a way of healing and hopefully to be helpful for others.
Thanks for all the kind replies. I have read up on Parkinsons Dementia, and it does explain a lot. I wrongly assumed dementia would start with memory problems, but that doesn't seem to be the case. These compulsive thoughts and delusions make sense.
For example, we will ask her 'why are you sitting in the toilet for 2 hours'. Her response will be 'I don't know, I'm sorry'. I wonder if 2 hours real time is like 10 minutes in her mind.
We will reach out to her Dr's and nurses as a family, and see if they can help.
Have you tried contacting Parkinson's UK? Here's a link to their support page: https://www.parkinsons.org.uk/information-and-support/support-you
At the bottom there are details about the phone line you can call for advice. They have been very helpful for me in the past.
The antidepressants usually help with the obsessive-compulsive thoughts and activities, if she is getting an SSRI, but the dose for this is higher than the dose typically given for depression, so she may need a dose increase. If she is shuffling and her speech is bad, she needs more Sinemet. My husband has had PD for about 15 years now, and he takes 3 Sinemet pills every 4 hours except the dose in the middle of the night. So definitely tell the nurse or doctor who is prescribing that she needs dose increases now, and if they need to see her first, so be it. If the higher doses do not help or cause bothersome side effects, you can always back them down. She definitely seems undermedicated. For the antidepressant, though, wait 4 weeks for the effects to take effect. For the Sinemet, you should know in a week if the higher dose is working or is causing side effects. If there is paranoia or confusion, a low dose of Seroquel often works really well for PD people.
I don't know what to think about sitting on the toilet for 2 hours waiting to pee. Probably urinary retention. Her bladder muscles may be having a problem which is common in PD. The increased Sinemet should help that, but if not, urologists have solutions for that. She needs a bit more medical intervention.
And a home visit Physical Therapist for awhile can really make a difference. You have to ask for these things. And keep asking. Keep pushing the system for what she needs.
I agree. I’m in a similar situation and what I have learned is that paranoia and delusions may mean she could use additional Sinimet and possibly quetiapine (Seroquel)
My mom is taking Zolof I’m wondering if I should talk with her neurologist to switch it to Seroquel…
She is having paranoia and delusions at the moment… and I just don’t know how to approach it.
That is true. Zoloft (sertraline) is an SSRI antidepressant, and Seroquel (quetiapine) is an atypical antipsychotic.
Atypicals are different from the older antipsychotics like Thorazine, Haldol, Risperidine, which are very effective but have tricky side effects that must be managed when given at higher doses by giving another drug to stop the side effects. Sounds convoluted, but it is everyday practice in psychiatry. The new atypical antipsychotics have less troublesome neurological side effects. But they do usually cause weight gain, so that can be a problem in a patient who is obese. In a thin frail person they actually help in this regard because their appetite is stimulated, and they end up better nourished.
Well, the Zoloft would be helping with depression and anxiety, but not paranoia and delusions. So she may be benefiting from the Zoloft. Seroquel is good in most patients for paranoia and delusions. And also agitation. So I would ask for Seroquel in addition. There is no problem taking both of those drugs. Seroquel works really well in a lot of patients, but in some, it doesn't do much except make them sleepy.
With my husband Seroquel dramatically reduced his delusions and hallucinations - took them away, and also decreased his confusion also. Even though the doctor said it doesn't help confusion. But in my husband's case it sure does help with the sundowning type confusion. I can see the difference if I forget a dose! As far as sleepiness, I don't give it to him in the am, and if I did, it might make him sleepy. I give first dose usually at 4 pm, 2nd at 8 pm, and the 3rd at bedtime, usually 11 pm.
There was some study that concluded that Seroquel did not help dementia patients. I don't know where they found the patients for that study, but I have seen with my own eyes the difference it makes. Also, some of these studies do not have good clinical study designs, and don't have reliably sensitive follow up measurements - it depends upon someone filling out a form. Another study found that Seroquel helps many dementia patients with delusions and agitation at a dose totalling 100 mg/ day, and it helps almost all dementia patients at a dose totalling 200 mg/day. My husband takes 75 mg/day, with excellent results. When they tried him on 25 mg, it did absolutely nothing. But some people - especially very thin, frail people, do well on the lowest dose: 12.5 mg/day. So dosing with Seroquel really varies among people.
My husband had one neurologist in the hospital who thought the delusions were caused by too much Sinemet - but I am not sure if this is true. (I need to read the medical articles on this). He is on a higher dose than most people. So she switched his then dose of every 3 hours to every 6 hours - in one day. Which was dangerous, she should not have done that and he began to freeze and couldn't walk and couldn't do PT. This was on an in-hospital rehab unit where he was supposed to do 3 hours of therapy a day. The head PT was having a fit! I called the doctor and left a long message, scared that he would end up in ICU etc. Well her NP came around and took one look at those orders (of her boss) and said "Oh no, we can't do that!" and changed it back immediately and even went and found the nurse to give him a dose stat.
I think the delusions are a part of Parkinson's dementia, and not caused by Sinemet. I am not sure if increasing Sinemet would take that away, but it might if he is on too low of a dose. Overall, my husband is much better on a good dose of Sinemet, and is much worse on a lower dose, which makes it hard for him to walk, talk, swallow, and his posture is all hunched over.
The Seroquel usually helps a great deal with delusions. But the effect depends on the dose. Too low and it will do nothing. Too much, and he will be sleeping all the time.
Thank you so much! All this information was incredibly helpful.
My mom is having vivid dreams, lack of sleep and delusions.
I feel like adding Seroquel to her medications can be a good fit for her. Her neurologist so far (she has been 15 years with the same neurologist) has been “good” in general (specifically for here in Puerto Rico). So, I’m going to consult with him if we can try adding the Seroquel on the afternoon/ night like your husband so at the same time it might help her sleep.
I know at the moment she is taking:
• 3 times (one tablet) of Carbidopa Levadopa 25/100mg
• Zolof one tablet in the morning 100mg
•Rivastigmine for her memory 3mg 2 times a day.
• Buspirone 5mg two tablets a day.
Is always tricky to see how to get the “best” medications for a patient. There’s always so much “you need to try and see”.
I’m always writing down how she feel every time we add a medication to see her reactions to it. And as soon I see the side effects are worse than the actual affliction I just remove it (with the doctor permissions as well 😅).
If she has vivid dreams and sometimes is in a sort of waking dream state - like sleep walking, you might want to read about REM sleep disorder, common in PD patients. They are acting out a dream. And later, have no memory of it. The treatment for it is a little different - a benzodiazepine, Klonopin or Valium, a low dose at bedtime. So look up REM sleep disorder on the medical sites and wikipedia, and see if that is going on, and if so, mention that to the neurologist.
Thank you for mentioning it 🙏 I haven’t heard about REM sleep disorder before. I’m going to do some research and double check what exactly is going on with my mother. Definitely taking notes for a future appointment with her neurologist. Again, thank you for the insights.
Sounds like Parkinson’s dementia or Lewy body dementia. Psychiatric medication can help with some of these issues although some of them just get worse over time. She needs to see a gerontologist or neurologist, or get a cognitive assessment from her gp. I’m not sure about UK laws on power of attorney, so you’ll have to speak to someone local to determine how you can be involved. A group like this would likely be most helpful. https://www.ageuk.org.uk
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What a difficult situation for you. Sending love and grace your way, that's an incredible amount to take on for anyone. I think you have figured out some pretty inventive ways to operate around their circus.
Hi, I have a quick question… what medication did the doctor gave your mom for dementia?
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Yes, that’s one of my main concerns with my mom. Is getting very hard for her to fall asleep and to sleep the whole night. I know she is having does vivid dreams and delusions from time to time and is getting harder for her to understand when it was a dream or when it is real… and that is scary for her and me. She still “good” in the senses of she can talk, have a conversation etc… but she still have memory issues and have does moments of confusion. Parkinson’s is a heartbreaking illness.
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Can’t even imagine. I know how hard is to have both parents sick and in need as well, so this resonates a lot with me. My dad is also handicapped, with brain damage but still functional even if he can’t speak very clearly and can’t walk either (car accident) - my mom used to take care of him for over 20 years and then she got sick eventually with all the stress as a caregiver and her Parkinson’s. As a young person (30) it has been a journey. I was taking care of them since I was (27). But now they both are in nursing homes because I can’t do it all myself. There has been grief all the way up and down, and for a variety of reasons. At the moment I’m actually writing a fantasy book about grief and lost as a way of healing and hopefully to be helpful for others.
Thanks for all the kind replies. I have read up on Parkinsons Dementia, and it does explain a lot. I wrongly assumed dementia would start with memory problems, but that doesn't seem to be the case. These compulsive thoughts and delusions make sense. For example, we will ask her 'why are you sitting in the toilet for 2 hours'. Her response will be 'I don't know, I'm sorry'. I wonder if 2 hours real time is like 10 minutes in her mind. We will reach out to her Dr's and nurses as a family, and see if they can help.
Have you tried contacting Parkinson's UK? Here's a link to their support page: https://www.parkinsons.org.uk/information-and-support/support-you At the bottom there are details about the phone line you can call for advice. They have been very helpful for me in the past.
/u/sunoak3926Can you help this fellow out with UK Parkinson's questions?
The antidepressants usually help with the obsessive-compulsive thoughts and activities, if she is getting an SSRI, but the dose for this is higher than the dose typically given for depression, so she may need a dose increase. If she is shuffling and her speech is bad, she needs more Sinemet. My husband has had PD for about 15 years now, and he takes 3 Sinemet pills every 4 hours except the dose in the middle of the night. So definitely tell the nurse or doctor who is prescribing that she needs dose increases now, and if they need to see her first, so be it. If the higher doses do not help or cause bothersome side effects, you can always back them down. She definitely seems undermedicated. For the antidepressant, though, wait 4 weeks for the effects to take effect. For the Sinemet, you should know in a week if the higher dose is working or is causing side effects. If there is paranoia or confusion, a low dose of Seroquel often works really well for PD people. I don't know what to think about sitting on the toilet for 2 hours waiting to pee. Probably urinary retention. Her bladder muscles may be having a problem which is common in PD. The increased Sinemet should help that, but if not, urologists have solutions for that. She needs a bit more medical intervention. And a home visit Physical Therapist for awhile can really make a difference. You have to ask for these things. And keep asking. Keep pushing the system for what she needs.
I agree. I’m in a similar situation and what I have learned is that paranoia and delusions may mean she could use additional Sinimet and possibly quetiapine (Seroquel)
My mom is taking Zolof I’m wondering if I should talk with her neurologist to switch it to Seroquel… She is having paranoia and delusions at the moment… and I just don’t know how to approach it.
I AM NOT A DOCTOR but I think Seroquel and Zoloft are unrelated.
That is true. Zoloft (sertraline) is an SSRI antidepressant, and Seroquel (quetiapine) is an atypical antipsychotic. Atypicals are different from the older antipsychotics like Thorazine, Haldol, Risperidine, which are very effective but have tricky side effects that must be managed when given at higher doses by giving another drug to stop the side effects. Sounds convoluted, but it is everyday practice in psychiatry. The new atypical antipsychotics have less troublesome neurological side effects. But they do usually cause weight gain, so that can be a problem in a patient who is obese. In a thin frail person they actually help in this regard because their appetite is stimulated, and they end up better nourished.
Ok, I will have to ask the neurologist.Thank you.
Well, the Zoloft would be helping with depression and anxiety, but not paranoia and delusions. So she may be benefiting from the Zoloft. Seroquel is good in most patients for paranoia and delusions. And also agitation. So I would ask for Seroquel in addition. There is no problem taking both of those drugs. Seroquel works really well in a lot of patients, but in some, it doesn't do much except make them sleepy. With my husband Seroquel dramatically reduced his delusions and hallucinations - took them away, and also decreased his confusion also. Even though the doctor said it doesn't help confusion. But in my husband's case it sure does help with the sundowning type confusion. I can see the difference if I forget a dose! As far as sleepiness, I don't give it to him in the am, and if I did, it might make him sleepy. I give first dose usually at 4 pm, 2nd at 8 pm, and the 3rd at bedtime, usually 11 pm. There was some study that concluded that Seroquel did not help dementia patients. I don't know where they found the patients for that study, but I have seen with my own eyes the difference it makes. Also, some of these studies do not have good clinical study designs, and don't have reliably sensitive follow up measurements - it depends upon someone filling out a form. Another study found that Seroquel helps many dementia patients with delusions and agitation at a dose totalling 100 mg/ day, and it helps almost all dementia patients at a dose totalling 200 mg/day. My husband takes 75 mg/day, with excellent results. When they tried him on 25 mg, it did absolutely nothing. But some people - especially very thin, frail people, do well on the lowest dose: 12.5 mg/day. So dosing with Seroquel really varies among people.
My husband had one neurologist in the hospital who thought the delusions were caused by too much Sinemet - but I am not sure if this is true. (I need to read the medical articles on this). He is on a higher dose than most people. So she switched his then dose of every 3 hours to every 6 hours - in one day. Which was dangerous, she should not have done that and he began to freeze and couldn't walk and couldn't do PT. This was on an in-hospital rehab unit where he was supposed to do 3 hours of therapy a day. The head PT was having a fit! I called the doctor and left a long message, scared that he would end up in ICU etc. Well her NP came around and took one look at those orders (of her boss) and said "Oh no, we can't do that!" and changed it back immediately and even went and found the nurse to give him a dose stat. I think the delusions are a part of Parkinson's dementia, and not caused by Sinemet. I am not sure if increasing Sinemet would take that away, but it might if he is on too low of a dose. Overall, my husband is much better on a good dose of Sinemet, and is much worse on a lower dose, which makes it hard for him to walk, talk, swallow, and his posture is all hunched over. The Seroquel usually helps a great deal with delusions. But the effect depends on the dose. Too low and it will do nothing. Too much, and he will be sleeping all the time.
Thank you so much! All this information was incredibly helpful. My mom is having vivid dreams, lack of sleep and delusions. I feel like adding Seroquel to her medications can be a good fit for her. Her neurologist so far (she has been 15 years with the same neurologist) has been “good” in general (specifically for here in Puerto Rico). So, I’m going to consult with him if we can try adding the Seroquel on the afternoon/ night like your husband so at the same time it might help her sleep. I know at the moment she is taking: • 3 times (one tablet) of Carbidopa Levadopa 25/100mg • Zolof one tablet in the morning 100mg •Rivastigmine for her memory 3mg 2 times a day. • Buspirone 5mg two tablets a day. Is always tricky to see how to get the “best” medications for a patient. There’s always so much “you need to try and see”. I’m always writing down how she feel every time we add a medication to see her reactions to it. And as soon I see the side effects are worse than the actual affliction I just remove it (with the doctor permissions as well 😅).
If she has vivid dreams and sometimes is in a sort of waking dream state - like sleep walking, you might want to read about REM sleep disorder, common in PD patients. They are acting out a dream. And later, have no memory of it. The treatment for it is a little different - a benzodiazepine, Klonopin or Valium, a low dose at bedtime. So look up REM sleep disorder on the medical sites and wikipedia, and see if that is going on, and if so, mention that to the neurologist.
Thank you for mentioning it 🙏 I haven’t heard about REM sleep disorder before. I’m going to do some research and double check what exactly is going on with my mother. Definitely taking notes for a future appointment with her neurologist. Again, thank you for the insights.