Hi. My dad is in his 80’s and is in stage 5 Parkinson’s. Can anyone enlighten me to why he insists on getting up and attempting to walk when he can’t. All attempts result in him being found on the floor and it’s causing big problems in trying to care for him. Could it be impulsiveness and compulsiveness ?
Hello I can quite understand how difficult this makes an already hard situation. Wouldn’t want to comment on the compulsive idea you mention but just to offer an alternative it might be that he doesn’t want to accept it. It is a big thing to realise you can no longer move when you want to, needing help with such a basic activity as walking which he has managed perfectly well on his own for 80 odd years. It might be he is being stubborn or perhaps his pride won’t let him accept it. It might also be that his brain. is not processing information as he used to. Maybe he is just scared of what it means to his future. It can be exasperating when someone insists on taking what appears to be such an obvious risk. There are no easy answers. but drip feeding may help - not making a big deal of it, making the idea of help as positive as you can, explaining your worries etc but crucially at a time when he not just fallen when it can sound like criticism,. If he will agree it is probably worth getting a professional assessment although I suspect you may have a job and a half getting him to see that in a positive light. Not sure how much help this is but perhaps food for thought, Good luck.
I have PD and am in my mid 80’s. Not sure what stage I am at, I’ve never enquired and not sure I want to know. I live about 1 mile from my local town centre and always endeavour to walk when I go into town. I maintain this discipline for fear of losing the ability to do so. Could this be the reason your father insists on walking?
Thanks for your reply. Yes I have thought it may be because he is willing to accept his legs don’t work for him anymore but it seems to be more than that.
He regularly falls and bangs his head and his head is covered in cuts. He has only recently come out of a three week stay in hospital for a fall on his arm. A stay that shocked him because although he tried daily they to his horror wouldn’t let him out. We have had a hospital bed fitted downstairs and carers arranged to come four times a day. Despite being told his walking and falling makes his care unmanageable and a return to hospital inevitable he has already jumped up and walked and fallen on my 76 year old mum and last night fell in the kitchen needing an ambulance or local relatives to be called to come and lift him.
In hospital he had a sudden urge to walk to the bank and it took three staff to stop him. He knows he would never make it out of the ward, never mind to a bank.
He can’t possibly hope he can make it all the way to a bank when he can’t get to the kitchen.
It seems to have an element of sudden impulses to do things.
It’s been the big issue for me for many weeks now since a deterioration. I know even with carers attending and a hospital bed that this insisting on walking and falling is going to take its toll heavily on my mum who will have to give her part time job up which is all she has and will result in dad going to hospital or a home.
I’ve just been searching for an explanation to this because it doesn’t serve him to do this and continually doing something that is harmful to you and your situation seems to need some other motive that he may be finding it hard to control.
I’ve had conversations with him about these things and he doesn’t seem mentally impaired so as not to be able to understand this situation.
When I saw this “impulsiveness and compulsiveness” board for the first time it gave me an explanation I hadn’t thought of before. That despite knowing the situation he gets sudden impulses to do things and go places.
Id really appreciate any input. Is this how falls generallly happen ? Is it normal to find they just continue to jump up and fall metres away multiple times a day ?
We have spent thousands on electric wheel chairs and he refuses to take advantage of the mobility it gives him. If he would use it, lots of his and mums problems would be solved.
You could be right. I haven’t heard of it happening in quite this way before but that doesn’t mean it can’t. The most common form is gambling/changed spending habitsvg and overeating. However I am aware of a degree of this in myself in that I find things can’t wait in the way I used to be able to do. It could be something quite trivial such as if someone came round and we were eating and in the course of conversation something came up that meant I had to get something for them. I would have to do it straightaway not wait until we had finished eating. I can’t keep gifts now until the ‘due date’ if I’ve got it I have to give it straightaway and if I am in the middle of something I would have to keep going until it was finished - which could be 2 or 3 in the morning. Whilst not the same as your husband it strikes me from your description a not dissimilar thing. In my case, now that I recognise it, it is sheer will power that isn’t always successful but doesn’t have the consequences that your husband faces. I am afraid I don’t have any practical answers for you but I can tell you that it is extremely difficult to counter that urge or voice or whatever trigger sets your husband off. My rational head can be perfectly clear in saying sensible things like ‘that can wait’ and even though I know that, the compulsive bug is like an over ride button. What did the hospital make of all this? Have you spoken to your Consultant or specialist nurse (if you have one). You probably have and I admit I am clutching at straws. I am so sorry I can’t do more to help. I do hope you are able to get the answers you need from somewhere and soon.
Thanks for your insight. He had to go to a+e again today.
In his three week hospital stay they didn’t really solve anything, just cared for him until a hospital bed and carers were put in place. Now he’s home behaving in the same way as before, insisting on walking, falling and hurting himself.
We are going to try and get a medication review through his doctor. He ha a consultant appointment for April but was notified it had been cancelled.
I am only 64 and am falling do to bad balance. I don’t know your dads mental capacity.
But inside everyone of us is that we walk and must not give up. Was your dad a person who ever said he can’t. This is just my opinion.
My wife knows once I lay down Parkinson’s won. She knows that if I fall and get injured it is not her fault. She like you with your dad cares. You love your dad it shows.
It might be his dicision to fight. Tom
He is a fighter yes. I’ve thought this too. It’s just he’s hurting himself and is never successfully walking and he knows it will put him back in hospital. He had only been free of there for a week and hated every minute.
So he might be determined and a fighter but has he lost his ability to see the harm it’s doing to him. He is going to end up in hospital with a serious break, in a care home or dead. He’s making his care unmanageable. He has always been sensible up to this. He says he understands, then you leave him for half an hour, come back and find him on the floor, over and over again.
We are just struggling to understand or manage it.
Thanks for your reply.
I think that is a very good idea you should perhaps also push for a new appt with the consultant. Good luck. Please let us know how you are getting on. If I come across anything that might help I will be sure to pass it on.
Hi June, it is indeed a good plan for you to review your fathers drug regimen with a neurologist. It may be that his drugs are causing compulsive behaviours. I would look most closely at the dopamine agonists if he is taking these. The most commonly prescribed dopamine agonists are pramipexole and ropinirole. These drugs bind at slightly different regions on their target within the cell. As a result their actions can be somewhat different particularly at the level of compulsive behaviours where ropinirole is more highly correlated with such behaviours. But I agree with the comments that others have made that this behaviour of your father might be simply his refusal to give in to what life has dealt him. Exercise is so important with PD because when we exercise our bodies we also exercise our minds we boost our self-esteem and we calm our selves. I’m wondering if it might be possible to find someone who would take him on walks if he’s able to walk with a support of some kind for example or if there’s some other exercise that he can do maybe ride a stationary bike. With luck you may find something to give him the feeling of being active, to help him believe that he still has some control over his body. I know this makes a world of difference for me. Good luck June
Thanks so much for your reply. Dad can’t walk I’m afraid as he falls. He has just gone into a nursing home as his care is now too much for mum.
Now he seems to suffer from fatigue and confusion and I’m wondering, after reading the forums, how much that is caused by the Parkinson’s medication.
He is in a great home with its own church and gardens right next to mum with everything he could want but he doesn’t seem able to appreciate any of it because he’ plagued by fatigue/sleepiness and confusion.
Thanks so much for you comments.
It must feel like you have resolved one problem only to be replaced by another. I notice you say he has just gone into a nursing home. That suggests it was recent, if so he may need time to adjust to his new surroundings and routines, once they become familiar you may well find he settles. Moving is known to be one of life’s most stressful activities and for your Dad this has meant a complete change of home,
routines and people, over which he had little or no control. I do hope this is all it is and that he settles so that you can all relax a bit without the constant worry that has become your norm. My best wishes to you all.