Full moon again?!

Anyone else dealing with mad stubbornness today? It's been a nightmare, and he is frozen in the bathroom as I write. I had to walk away when I lost another wrestling match. He was sweet and easy at the doctor's office, but before and after was unmoveable, unpersuadable, inclined to crush my hands rather than transfer to a bar. Will not, can not bend to sit, but will jump up and stand if I do leave him for a second. He walked all around the ramp, and I had to move the furniture and plant pots, because he got stuck at them, couldn't back up, couldn't go around, wouldn't sit back in his wheelchair. I'm at my wit's end. And my arm's end. I'm just exhausted, but I can't get him dressed for bed while he is fighting every move. What can I do?!?!

38 Replies

  • Meletonin....it may put him to sleep but hey its 1 am where youre at! or 10 pm when you wrote this....Maybe if he has an antidpressant or if you have some Klonopin....OR if you have a friend or relative that can get him out of his combative mood....It's midnight, My husband is still in the bathroom....catheter and all....since 11 pm He spends a good half hour in there just to spit in the toilet...we hgave a suction machine for this...why is he doing this...he doesn't have to pee anymore...it's not about the pee though cuz he's been doing this routine for ever but now its later!! and getting him to turn off the tv before 10:30 is no longer an option....This staying up forever has been happening for several weeks...and then these last few days I figured he was over anxious....tomorrow night...we are going to work in Melatonin for a pre relaxing bedtime experience....I don't know if this is because of full moon....is it full moon?

    I wish you a good nithgt


  • My guy was a wildlife biologist. I keep fantasizing about using a tranquilizer gun on him! There must be one stashed around here somewhere!

  • wild life biologist! so cool...Hey maybe you should get him a stuffed animal to perseverate on , you know hide it behind a house plant give him an adventure (No you know what will happen to the plant) or just put it in his lap about 7 pm and by nine maybe he be all satifsfied that the bear is indeed ok and not harbouring some sort of skin ailment.....hahaahha...And I dont know about the traquilizer...wasnt there one that was used for recreational purposes by kids in the '60-70s . Gave them hallucinations....it wasnt' LSD but soemthing like itIt was 1 am before B got to bed.....which meant about 2 am for me.....

    I hope you get some rest today...no one will blame you if find that tranquilizer gun LOL



  • Oh how I can sympathise with your plight. I have the same with G. But the phsio has seen this and we have made adaptations. We have a raised shower seat that also wheels over the toilet so that I can push the seat under him and he manages better with this. But he did fall yesterday and has now fractured his clavicle making mobility and constipation a real problem.

    Stay strong, you are allowed to shout and as long as he is in a safe position (even if that is on the floor if he falls) you are allowed to take time out for a few minutes. I sincerely hope you have a better day today xx

  • So what do they do for a fractured clavicle? ( seems it might be awfully painful.) Does he get immobilized somehow!

  • Fractured clavical is arm in sling for 6 weeks or so.

    This will make him 100 times less mobile and it has been so difficult to move him. Rang surgery yesterday who gave me a number to ring for help, rang them who gave me another number to ring, rang them, no can do.

    Rang our social worker who gave me another number to ring to employ privately to help with getting him up and showering, of course at my cost, cannot help until Monday earliest.

    She then spoke about a carers prescription and was going to send a form to the GP but not heard anything and of course they are now shut over the weekend!

    I think the theme of this whole affair is that the hospital should have considered my needs before discharging an already very sick and immobile man. I am to soft in the head. I should be saying NO I'm not able to do this. Whatever you ask for, these highly paid professionals tell you to do the ground work, phone calls etc.

    Sorry to rant but gonna have a cup of tea now and calm down.

    The irony of all of this is these people tell me they cannot lift without a hoist, or they won't do personal care, but here I am 24/7 doing everything with no respite at all. (although a bid is in for 12 hour night care once a week and 6 hours day care once a week, but won't happen until a panel agrees the funding and the agency can find the staff)

    The phisio did call briefly, Bless him, to do a quick assessment (he was time pressured) and has given us some leg exercises to keep Geoff moving a bit.

    Anyway onward and upward and i will do the best I can but it is simply just not fair. Grrr

    I am at the point where I think I should write to y MP but

    a) I don't have the energy and

    b) He won't actually so anything but spout words!!!

  • Here I have been worried that if he is ever admitted for rehab they would never let him go! That's one thing different with private insurance in our litigious culture, I guess. I'm so sorry for your ordeal. It sounds about as bad as it can be. I hope you get some help soon!

  • Surely the hospital should be checking to make sure you have the correct package before they discharge a patient. I know last time S was in, that's all they were concerned about. That's why we have such a bed blocking problem, because doctors are going this. Perhaps, they are solving it, by telling doctors to shut up!

    Hope Geoff is recovering and you are not TOOOOOOO stressed!

    Sending big hug and lots of love


  • Hi Heady.

    I think that because he is 64 and I am 59 they didn't think of the consequences of sending home with just me to manage. It clearly was an oversight and one that I won't let happen again (but hope I never have to) Thanks for your support xx

    We have been promised help from Monday but they simply did not have the resources over this weekend

  • Oh EC, it has been a rough day. I am sorry for all of us. Sad to say it does not get better. They are like little kids that keep it together all day at school and meltdown when they get home. It's got to be the full moon today because he has been challenging I all fronts:( I am developing arthritis in my fingers which makes the prying the fingers off of things even more difficult. Is your arm ok?

    Sending big hugs your way.. GC

  • Arm is generally okay, thanks for asking, though weak and gets strained easily, so I iced it for a couple of hours after I finally got him into bed. The arthritis in my hands, just like yours, makes the prying harder, but worst is his tendency to crush my hands and wrists if he gets hold of them. I was in a panic for a bit yesterday, chopping hard at his wrist with one hand to try to get him to release the other, which he had in an absolutely iron grasp. The grinding of the arthritic joints is excruciating, and he just can't open his hands once they begin to close!

  • I scream right then and there when he crushes...it scares him enough to let go , I guess. Why do they do that....they like the feeling of OUR hands and want more? believe me I don't feel sorry for B when he does that and feel he has a frikin choice!


  • A its not their choice it's a neurological redponse. The signal from the brain to the hand is disrupted once they latch on. So the trick is to get them not to in the first place which is hard to do. I grab his wrists before he has a chance to get my hand. I do notice it happens more when he panics about falling during a transfer. I also have a nifty little martial arts move that helps as well. I cannot believe how strong his grip still is. Like superman strength. PSP is like krymptonight or whatever set Suoerman off. I kind of identify with superwoman mysel- ha!

  • Do tell us your martial arts trick. As long as we don't have to be a black belt , we might be able to minimize, even prevent the crush!

  • Awe bless you Easterncedar

    We went through this kind of thing with dad

    Can you get a physio in to give you some tips?

    Any objects that are in his eyeline will cause freezing, some tips we used to use as follows:

    When your Psp patient is stuck/frozen say out loud left, right (slowly) this sends a signal from their brain to pick up their left foot then right


    Say, 1, 2 as it does the same thing but left right worked better for dad

    Hard though it is, try not too show impatience or raise your voice as this will only make things worse

    It's very frustrating and tiring all round and I know, makes you wanna scream!!

    My dad used to want to stay up way too late and it meant mum or I had to wait until dad was ready to go to bed, infuriating times!

    If you can get him to take a one or better two hour sleep in the day (in bed) this also helps a little with their mobility because they are not so tired then, equally you should try n grab rest at the same time

    This may not help at all, but I thought it worth letting you know what helped us!

    Mainly I'd be wanting a physio in

    Hope today's a better day

    Hugs X

  • Yes, if he is walking I often say 1 2 ( oddly he has lost the left/right distinction). Now he is getting frozen in a half standing position, can't sit or stand, just holding the bars. He can keep that stance for ages, locked on to the bars. He also grabs at things as he passes in the wheelchair, door frames as we go through, furniture and such, which is scary. I'm afraid one day I won't stop in time and I'll break his arm.

  • Scary indeed x

  • My guy does this too frozen half way up. His helper got in a panic when it happened as she was getting on the toilet. He was wet so she had him stripped down . R had just come out of a warm bed and his lips were blue and he had goose bumps all over Since he was naked we had nothing to hold on to. I often grab the back of his flannel hospital gown or his pants. I put some warm towels from the dryer on his back and than was able to pry him loose. And able to get him to raise his head. It is so hard. When there are any outside stimuli like cold,wind or loud noise his brain seems to get over loaded. Than if I get angry or am in pain because his griping me too tight he turns rigid and freezes too. Life is hard. Sometimes I have to take it an hour at a time. Hugs.

  • That sounds just like us! And your husband was diagnosed 9 years ago? We are just at 5. Warm towels seems like a very good idea. I'm going to try that next time. Thanks!

  • B is gait freezing as well/ My small attempt at PT is not preventing him from freezing in fact it's been 2 months and the reason why we are doing more wheelchair activities....but he'll freeze at the gum and we have actually had to stop going on a few machines..."Step Over the Can" Touch your knee to the bar....(an exercise where he holds on to a secure bar in front of him and heal to toe to knee mimiking walking...marching) then I make him visualize that ....works about 30%..ok 10% of the time..

    Remember we are Queens (and Kings ) of Reiteration..how come I don't feel like royalty


  • gum = gym

  • That sounds such a difficult situation, I hadn't realised they could become so stubborn, another thing to look forward to! I hope that you eventually managed to get him to bed but it must take its toll having to deal with this sort of behaviour day in and day out. Having to wait for them to get to sleep when you are dog tired is so taxing, both physically and mentally. Take care and try to get some rest when he is resting, no matter what time of day.

    Love and hugs

    Kate xx

  • I know how much sleep matters. I left the office early one day last week and took a nap in the car before going home. It helped! The problem when I'm home is that he can sleep while I'm moving around, doing chores in his vicinity, but when I try to nap or go out of sight he gets antsy. Aggravating, just a bit. Ha.

  • EC I hope you managed to get him to finish and get to bed. I can only suggest trying the drug regime mentioned above, M only tried the bathroom rebellion once and I am sorry to say I used superior strength which is not an option for you.

    When she had issues of being afraid of going to asleep, I would give a sleeping pill sorry no longer remember what, as only used infrequently. We had carers come in at 1900 to help me toilet and put M to bed after her bad fall so as rarely had to deal with cantancorous episodes on my own.

    Again I think it is the different PSP pathways affects the behaviour differently I was lucky M became more placid as PSP progressed. I hope he settles down for you before he accidentally hurts you and is forced down the care home route. I suggest you may need to discuss the situation with your GP if he persists with the problem.

    Best wishes Tim

  • Thanks, Tim. Tonight I called on his daughters, and they each called back for a video chat, and that worked beautifully. Their cheerful smiles and talk settled him down at last, and we made it to bed pretty smoothly. I think this obstreperous phase will pass, as they all seem to. Here's hoping! Love, ec

  • I can only imagine how challenging it can be for all the devoted family caregivers out there As I follow many of the posts I get an understanding of just how difficult it can be caring for a spouse, mother or father and sometimes even a brother or sister. I don't think your loved one is trying to be anal in the least little bit. Every day as the disease progresses, behaviours that were seemingly uncharacteristic have now become the new norm for those of us with PSP. I don't go out of my way to make things difficult for my wife... I'm quite sure that she has a different take on that Lol. And just as you mourn the loss of this "living" person, that person is also feeling and noticing the changes as well... especially in the early stages of the disease. So, take heart and know that even your best efforts can be frustrating, we appreciate everything you do for us.

  • Hey Daddyt, I still havent got to your blog or journal...what was the address?

    Yous ay youdon't go out of your way to make things difficult....Do you experience hand crushing? I don't think gait freezing is B's choice I can see it in his eyes. But squeezing my hand till my pincky meets my thumb and his eyes seem to want to do it...not nefariously but.... if this happens to you and your wife what are you feeling?

    Good to hear from you


  • The web address is wordpressco900/wordpress.com. When you get around to reading the blog, give yourself some time. It's better to read it from the beginning so you understand how I got to this point today. The first post is Nov 3/15... scroll all the way down the page lol. I haven't had any hand crushing, but I often wake with my hand clenched in a fist. I usually run it under some warm water and literally pry my fingers apart. I'm still in the late portion of the early stage and haven't experienced any "deliberate" actions on my part. And B... how far along is he?

  • I went to your address, only got the Home page telling me how to make my own ...It did not go to your blog....

    B has been diagnosed since March of 2013. Of course he showed signs of it several years prior. He spiraled pretty quickly in the last 3 years. He went from quitting Working '11 cuz he kept falling>What's wrong with you'12 >driving and building decks in '13 > I gave up teaching to stay with him in '13>giving up driving; '14>lost ability to swallow; tube fed '15>catheter and wheel chair '16.

    Within all of this time, he lost his ability to write; downward gaze; speak clearly; figure out how to do the things he was just doing in his life...almost burned house down when he left stove on and paper caught on fire in 2013(?) Banned from that activity! Some Dementia...or maybe "I don't know " is just easier...He is still awonderful guy his behavior has not had too many negative down turns . He has adopted a grandson so now he gets hugs that you know he just loves and Life is good....I can bitch and moan and I will, but B is (?) happy....We have heaven to look forward to so we are not afraid of death....(that doesn't mean we want to be in a painful car accident ...but you know what I mean...)

    Still trying to read your Blog


  • If you google wordpressco900/wordpress.com it should take you to the "google sight"...click on that, should take you to the blog. It's also published to facebook Tim Brown Ayr, On.for my family and friends which what the blog's intent to keep them updated.

    Sorry to hear that he has declined so quickly. PSP affects everyone differently. I have swallowing issues, but can still eat and drink with a thickener. Much of my voice has been reduced. I have frontal temporal dementia... my long term memory is good, anything short term sucks- my wife says that can be convenient sometimes Lol.

  • You seem very cognizant and able to remember what happened long enough to record it on line...that is good ,,..now if I could only get on this site....I will try again and then wait for one of my kids to come over and rescue me ...again



  • When I began the journal almost a year ago, I had some help from my wife in remembering many details. Back a few months ago I began to use the voice recorder function on my cell phone. When something noteworthy comes up, I always record it on it the phone and reference it later in the day when I sit down to journal. It's a good strategy when you can remember to use it Lol. Journaling has become an important mind exercise for me. I've tried other things like crosswords and word searches and failed miserably (:

  • Good Idea...I would fail miserably at it but still a good idea....


  • Nope still only get home page and advertisement thereof; no blogs made by those who have bought space...

    I'l wait til my kids get here


  • Oh EC, I'd love to give you some advise, but I'm sure I would upset most and the post would be taken down! It's so hard isn't it! Why does it always happen when you are in a rush or totally exhausted?????? I don't know the answer, I know brute force doesn't work, he is still a lot stronger than me. Shouting is a waste of time and only makes the situation worse, crying just upsets you and S doesn't even notice that anymore. Even your tranquillising gun, you would be left with a dead weight, you wouldn't be able to move. Can't do anything that causes pain, because they don't feel it.

    I know this will all be settled now, so I don't know how you handled it, but next time, I would just put him to bed in his clothes and make sure you have taken a shed load of sleeping pills, so he can't wake you, if he is uncomfortable!!! Oh, wouldn't that be great, I wonder if it would actually work and the message get through and register in the brain! Braver person than me, to try it, guess I'll just stick to the shouting and crying!!!

    Sending big hug and lots of love


  • Well said, Heady! what to do what to do....I wanna know why , what they are feeling if anything ! I know he wants to sleep he just fell asleep in the chair....Bruce, I can make you more comfy...c'mon!!!...When I was sick, I did just go to bed. I heard him fall and I did not could not get up...that only happened a few times but what could I do? he refused to go to bed a t a decent hour....I hae got to stop talking about this I am exhausted and its only 9:30 am....how many hours in military time , Tim? :)


  • Sometime ago, someone here posted a marvelous video series posted by Teepa Snow. This is link is to the Dementia Series. I find them so helpful as reminders. Start with #1. Each one in the series has a tip I need, for now or in the future.

  • My dear husband has the s a me issues with CBD. The last two nights have been aggravating to say the least.

    Although he has bowel movements pretty regularly for someone who is not too mobile, we go through the ritual of having to go/or not almost every time he has to go. I don't walk him too much, we use what we have. However, I do have to walk him then and it's more like me caring him. Not an easy thing to do. If I don't take him then he's relentless, agitated, and continues to go on and on about it. I told him last night I was not walking him, I didn't believe he had to go, he started fussing and moving his leg back and forth, shaking his foot, just anxed over all of it. I told him to cut it out, we would talk about it in 15 minutes if he still felt the need. He quieted down, relaxed, and fell asleep. It was just as you say, like and holds meltdown when they are tired and don't want to fall asleep.

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