Apart from communication difficulties, my mum's restlessness is the biggest problem we have.
I say we, but it is mainly for my dad who cares for her most of the time. She is constantly standing up out of her chair and then flopping back in - adjusting her clothes, wanting to go to different rooms, wanting the fan on and off, wanting her clothes changed, cardigans on and then off, the toilet every half an hour.
She doesn't seem to be able to sit calmly anymore and it is exhausting for my dad as she cannot stand or walk unaided and he is up and down all day helping her. It causes a lot of friction between them as he seems to think that it is something she should have control over. Sometimes he thinks she is doing it just to annoy him!
I'm pretty sure this must be something she can't control - has anyone else experienced this? Is it boredom, she has said before that she goes to the toilet so often because she is bored? Is it discomfort? The Parkinson's nurse who came to see us suggested that she take paracetamol semi-regularly in case she has pain which makes her restless.
Does anyone have any tips or insight or is this just a phase of the illness? She cannot speak at all anymore so it is very difficult to know what she feels from her perspective.
Thanks
Cathy
Written by
CateT
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Oh Jill - you are a godsend. Thank you so much for your insight - it is truly invaluable. I guess that must be it - difficulty concentrating on something for any length of time is bound to lead to restlessness. I will mention seroquel to the Parkinson's nurse
I will tell my dad and hopefully he will understand it better.
Mum is very restless, usually in the afternoons. She has been on seroquel for 3 weeks now without any appreciable benefit but it's definitly worth trying. Speak to your PSP nurse as it's a drug that needs to be used with caution. Mum started on the very lowest dose, which involves cutting a very small tablet in half. We are reluctant to try an increased dose as it makes her very drowsy in the daytime, which makes transfers and eating very difficult.
The restlessness is a part of the illness but I am not sure how much of a phase it is. Mum also gets very restless and is constantly plucking at her clothes. When she was more mobile she would get up and wander too, putting herself at risk from falling. From Mum's point of view I believe it is a desire to be up and doing something to help. She was always a busy person and one of the most difficult things for her is to be the recipient of care rather than the giver of it. She has expressed frustration that she can't do more. I don't think your Mum is able to control it and I'm pretty sure she is not doing it just to annoy your Dad.
Yes I remember mum constantly trying to get up to go to the toilet and then once sat down she would want to get up again. Even when she had tena lady pads on she would still want to go to the toilet. I also believe that mum was fed up of being sat down and not able to do things and mum was constantly on the go when she was well and was oblivous to the danger she would put herself in. She would also wander out to see where dad was and end up falling.
Also her right leg would constantly be shifting back and forward whilst she was sat down. I counted 21 times in 1 minute. I remember the doctor giving mum medication to ease that but to be honest I cannot remember what it was called.
i have been taking oxybutanin 10 mg for 6 mnths now and it helps the nocturnal prorbelm of wanting to wee every hour ro so (and the day time too) as the bladdder muscles are workign overtime
But there is still the urge to go more often than not - like
when i was younger and always"went" when there was a loo as 1 didnt know when next 1 mgiht be!! l
rememebr the good itmes when it is pssible to still control the bladder and bpwel- i am dreading the day when i cannot.,.
Yes it is very common to be restless and she is not doing it because she is bored. I strongly suggest that you make an appointment to speak with her doctor about this problem as he/she might have some solutions for you. My father went through an extreme stage stage of restlessness... he wasn't trying to... the compulsive behavior is part of the degeneration process... it will eventually calm down but it case is individual.... reading to her, interacting with her in activities that she enjoys, also if she is able to move/walk with and walker or other aids then have her get up and move...Yes, it is very important to get her to get some exercise as much as possible... she can sit for an hour but the get her up and move for as much as she can withstand 15 mins.... 30 mins.... No one can sit for long periods of time! She can sit for awhile... try to move/exercise...then lay down for awhile... provide some sort of stimulation for her.. radio, television, reading, or social interaction. If you have a wheel chair for her take her outside for a walk.... I hope this helps you.... We relieved a lot of anxiety, frustration, restlessness, etc... via exercise.
Sincerely, Barbara e-mail: barbarapetroske@yahoo.de
Hi Cate....unfortunately restlessness seems to be part of PSP. Frank is constantly fidgeting, plucking at his clothes, rubbing the side of his eye & trying to stand up. He has a Riser/Recliner chair & when he tries to stand up he pushes his shoulders back which then pushes his bottom forwards & there is always the risk of falling off the chair. It is a worry & very exhausting. I do find myself shouting at him sometimes even though I know he can't control it. I think it's worry/fear that makes me do that...oh & tiredness too!!!! Take care & keep smiling. Love Hazel B xx
Sorry to hear about your mum's restlessness and agitation but as has already been said it is all part of this illness.
Seroquel is a sedative which can cause dizziness amongst other things, so if your mum is constantly trying to stand and get out of her chair you do have to be careful. There are loads of others that she can try so her GP would be the best person to speak to for an alternative - better still is The PSP Association, nurse for your area.
If your dad has joined The PSP Association (free for carers and sufferers) he will know the name and phone number of his PSP Nurse Specialist who can definitely help with suggesting a better medication.
Our experience with Parkinson's Nurses is that they are specialists in mainly Parkinsons Disease. PSP IS different. I found the PSP Specialist Nurse from The PSP Association was invaluable. Through her and with her help I was able to inform my husband's GP and his nurses at his Care Home of her advice on medications,etc and they happily took it knowing she knew more about the disease than anyone.If they wanted to check on anything they would ring her.
My mom is now in hospice at home because. She is going passed to weeks at this point. She too would go almost every hour but has incontinence. Her biggest problem from the PSP is severe rigidity and her vision is going fast. She has many other physical issues going on that add to her limitations. At this point she has been in bed at home and we have med to help her relax her muscles a little and for pain but she is still very uncomfortable and when we try to move her it's like moving a statue made of stone. It's heartbreaking. This is a truly ticky disease.
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but it's definitly worth trying. Speak to your PSP nurse as it's a drug that needs to be used with caution. Mum started on the very lowest dose, which involves cutting a very small tablet in half. We are reluctant to try an increased dose as it makes her very drowsy in the daytime, which makes transfers and eating very difficult.
Really need advice.
Dad's final good deed
Julie
PSP eye problems
