My husband was diagnosed with PSP almost one year ago. He has been acting out his dreams for a couple of years. Several times he has choked me with his arm as we dozed watching TV. Last night, he did it again (We snuggle on the couch with his arm around me.). He tightened his arm around my neck. I always keep one hand close and I pulled down on his arm and told him he was choking me. Instead of loosening his grip, he pulled tighter with his left arm and hit me with his fist on top of my head four times before I was able to wake him up. I don't know what to do because I know it is only a matter of time when we won't be able to snuggle at all. I don't want to lose the precious times because of the fear of his hurting me. Also, with his apathy, he didn't really seem to care at the moment. He got up to go to bed and did what he had to do, then came over to tell me he was going to bed. Only thendid he even mention it and asked if he had been hitting me. I said yes and he apologized. Then he stood for a second and said, "That scares me." I said, "It scared me too." My husband is a very kind, non-confrontational, and gentle man. I feel confused because I don't want to hurt him by not sitting close to him when we watch TV, but he always goes to sleep and I don't know what might happen next.
Acting out Dreams: My husband was diagnosed... - PSP Association
Acting out Dreams
That’s terrifying, indeed. I’m sorry you have to deal with this. Can you respond more aggressively yourself to wake him up when that happens? You need to keep yourself safe, first of all.
I was pretty aggressive. But if it happens again, I'll try harder to wake him up sooner.
I'm sorry you're dealing with this. Our neurologist called it REM sleep disorder and it is common in people with brain diseases. I did not sleep with my husband due to his snoring but he had episodes of this I am sure. One night he threw the lamp to the floor off from the bedside table. I had a railing on the bed so he couldn't fall out or get out of the bed. I ended up moving the bedside table out of his reach to prevent further problems. Research the REM sleep disorder, but basically you have to do whatever is necessary to protect yourself, because you are correct. They are fast asleep and just acting out their dreams. Totally unaware that are hurting you.
Thank you. I will look this up.
I noticed this section on REM Behaviour Disorder (RBD) in the Summary article from CurePSP (see my earlier post)
"Treatment can be initiated for RBD on the basis of clinical history provided by the bed partner, but the possibility of nighttime psychosis must be kept in mind. The primary goal of treatment is to decrease the risk for sleep-related injury, including the removal of weapons and sharp-edged furniture from the bedroom. Oral treatment options include melatonin (3–18 mg) nightly (144) or low doses of clonazepam (0.25–1.0 mg) (145). While clonazepam is considered first line treatment for RBD, melatonin is often effective and better tolerated (144).
In summary, sleep disturbances in PSP are frequent and may severely impair quality of life. Overnight polysomnography should be considered to evaluate underlying causes of sleep disturbance. Several non-pharmacological and pharmacological treatment options exist, although evidence specific to PSP/CBS-related sleep dysfunction is sparse"
Dear Granny
I feel for you as we to experienced the same REM sleep disorder challenge. The first time it happened by husband punched me in the face - he had a very vivid dream where he saw a rat and punched it away!! Eventually I moved out of the bedroom. There is no way of controlling these events though night time Clonazepam reduced the distress for my husband ( and me)
Try to snuggle earlier in the day when he is less likely to fall asleep.
Love Tippy
Yes, that is what I'll probably have to do. It saddens me so much though. Thank you for your response.
Dear Granny,I totally recognise the issue, in our case my husband might cuddle up in the king bed at night, then suddenly start kicking, pinching, punching, choking or pulling hair. I have always been able to wake him e.g. by saying OUCH and moving away, though the "grip" reflex can make it difficult. He will apologise when I later explain what he did. He has also been told in no uncertain terms that it is unacceptable and that I cannot stay in the same bed or even in the same room if he scares me or hurts me.
It doesn't happen all the time; I believe there may be both medication and television habits that increase the likelihood of the vivid and violent dreams. I try to disuaude him from watching "high adrenaline" TV, especially in the evening. This is sometimes difficult and it seems he craves the high stimulation that some channels will happily supply, e.g. car crash TV, emergency response documentaries - and some online videos with very aggressive content. It seems less stressful to watch romantic comedy, music videos, dating shows etc instead, and it seems to lead to calmer sleep.
I am still waiting for the sleep assessment we requested before Christmas. I hadn't specifically asked about the REM disorder, but I will now!
I wish you the best, it is so important to be able to relax and do "normal" things together while it's feasible. It breaks my heart a little more every time I have to say "no, I won't do this because I don't trust you to be in control of your behaviour".
🫂🌻
It is heartbreaking, isn't it? Thank you for responding.
I'm so sorry this has happened you. This disease is so hard. Know that if your heart is broken, your mind has to stay strong because you are now the decision maker. Others have replied as I would but I'll add a few little things I found helpful to keep in my mind when days got tough - (1) you are now in charge of safety, you have to nearly treat it like a job if you can, don't let the sadness in, make the best and safest decision for everyone and if that is separate spaces, do it and don't look back. One incident is enough to start the carer thinking how can i make this safer, there's no place to wait to see if it happens again (2) talk to the medics about night time psychosis, is it really dreams that are causing the issue or is it psychosis, what medication can help, how can the medics help keep you safe as carer so you are injury free and able to have to have the energy that the very basics of this disease needs (3) is your psp patient over stimulated by the time evening comes? Can reduction in stimulation in the later parts of the evening help- so a reduction in high activity television, loud music, visitors to the house etc help in any way? Doing speech exercises earlier in the day was better. A main meal in the middle of the day when swallowing was better helped. Parking the walker up (when it is use) by 6pm or 7pm settled the body down better for the evening. TV programmes like the Chase and who wants to be a millionaire were in our case far better than drama or crime type programmes.
Thank you so much! These are wonderful suggestions! The night he hit me, he had been watching an action movie in which there was a lot of fighting. Normally, we don't watch those any time of day, but lately, he's been wanting to pick out the movies. We will make sure that doesn't happen again, even if it does hurt his feelings.
If something happens to you who will care for your loved one, this is a hard way to have to think but you must take care of yourself.
That is so true. I'm his person. Thank you.
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