My 80 Year old Mom was diagnosed with late stage PSP in October 2017. Since October last year she has displayed signs of extreme anxiety or agitation. The symptoms are that she tells of a spinning head sensation and the only way to get relief for her is to walk.
She is unable to walk by herself, so we as her children hold on to her and pace back and forwards. Through this process, she is extremely distressed and the pacing can last hours. Initially in the beginning it used to start around 3pm and then she can go on throughout the night until the next morning. Sleeplessness is a given.
Now this agitation can start any time during the day and again goes on for hours. Literally every day is a repeat of the previous with no relief for her or us as caregivers.
Doctors have prescribed so many any depressives which dont seem to work, and finally they have also given her Xanex and Ativan to trial. With Xanex she gets sleepy but wakes her self up gasping for breath. Ativan results in hallucinations. All that the doctors tell us is to keep her comfortable.
We have her on a physical / occupational therapy schedule for the present, however because of drowsiness caused by the drugs she is hardly effective at these.
We are at our wits end to try and help Mom as well as gain some relief for ourselves, as we are literally carrying her weight for her when walking resulting in exhaustion and back pain.
Does anyone have experience of this scenario with their loved ones and if so find any non medicinal solutions?
Thanking you all in advance for any help.
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PSPMom
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Oh, my dear, that is one of the worst situations I have heard of. I wish I had some solid advice. My guy had periods of agitation, but nothing like as long-lasting as that. I wonder whether the CBD oil might help. You can see Kevin's posts on that subject. Otherwise all I can suggest is massage, hands and feet at least, face and scalp, if she might accept it, warm packs, and music.
Have you tried Provacan? It is a CBD Oil which seems to help others on the site who have had problems getting sleep due to looking after loved ones. Worth a try?
I read your message with concern and with a sense of omg forgive the text speak my mum is exactly the same and has been for last 8 weeks the mental health team visit daily to view her bug have not added any value to help she is in a care home and they are really good but don’t have the answers ????like you we are at a loss to know what the next step is x so sympathise with you xxx
PSPMom, I haven't experienced this - I can't imagine how exhausting and distressing it must be to go through this with your poor mother
Is she able to use a rollator on her own? Even if she can't be on her legs on her own leaning on the rollator, could she sit on the rollator seat and push herself along with her feet? (backwards) Maybe a physiotherapist could figure out some mechanical way for her to achieve motion on her own so it wouldn't wear down family and caregivers for so many hours?
So sympathetic for this distressing time. Hang in there!
My wife has similar anxiety issues, but not quite that severe. It has gotten worse over the last couple months. Walking(or actually pacing) is what she does but does not seem to relieve the anxiety. She can’t seem to sit. She just pops up when I get her to sit. Although she is a slight fall risk, depending on the direction she leans that day, I stay close to her. She is on acetilopram, a mild anti anxiety drug and we have begun trying CBD oil. It does seem worse later in the day. If she stays up later than her usual bedtime (830), then she has restless sleep.
I just keep trying to reassure her. If you find something that works let me know.
Hi my mum is in the late stages of PSP to age 81. We use oramorph as very small dose of 1.25ml for anxiety. I wonder if your district nurse has any ideas. The small dose does not make mum sleepy and we are still able to stand her for the toilet. Good luck.
Thank you all for sharing your thoughts. It does seem an unusual case with my Mom and this level of distress she seems to be in due to the anxiety/agitation. She is extreme fall risk and also a little bit like a jack in the box. The minute she is seated, she pops back up ready to get up ):.
We live in Texas and I dont think CBD oil has passed its laws yet but I could be wrong. Has anyone actually seen benefits without side effects on their elderly loved ones? Beads0122 - have you seen it helping your wife? I am reluctant to try oramorph as she has not responded well to all the other related drugs we tried.
In my case (PSP / 6 years) I also found episodes of anxiety and agitation in the afternoon.
We give her 1 tablet of Lorazepan 1mg one hour before going to bed. Additionally, we are trying CBD Oil when the episode is presented. It seems that the situation is improving but I still have no definitive conclusions.
In a few days we will change fom Lorazepan to Clorazepan that offers longer effects over time.
Dear PSPMom, I see this post is from 4 years ago so I don't know if you are still on this horrendous journey or if your mother is now at peace. My dad has CBD and is going through the exact situation you describe in this post. He has been suffering agitation and delirium for about 9 weeks now and hasn't slept more than an hour at a time. He has lost 20kg in that time too from the constant movement. It's almost like he's stuck in a loop, for example at meal times we'll give him a spoonful of food then he'll stand up, go to the bathroom, sit on his shower chair, then stand up, go to the toilet, take down his pants, sit, stand up, we help him get his pants back on, then he comes back to his chair, we give him another spoonful of food and the cycle starts again. He is currently in a rehab hospital to try and get this under control but I feel they have no idea what to do or try. He currently takes a sertraline in the morning, and a very low dose of Quetiapine at night. We found out he'd been refusing his Queitapine at night and the staff were just letting him not take it - infuriating! We managed to source the Quetiapine in an oral liquid so now it's easier to 'hide' to give it to him.
If you don't mind me asking, did anything you try help your mum with the agitation??
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