Bad weekend

P has been bad tempered, awkward and downright difficult this weekend. His mobility is so bad he cannot even stand without some support and his frame, yet he constantly tries to get out of his chair. He has not eaten any dinner today, despite asking for it. After a relatively good week last week, I just knew this was coming !

When visitors are here (we have had 3 callers today) he is pleasant and smiley - I could scream. He keeps on until I bring him to bed then he lies awake, despite his 3 Clonazepam, calling for me. Then he wants to get out of bed in the morning long before the carer comes. It feels like I am dealing with a petulant child.

I think another week`s respite is on the horizon. Apologies for the rant.

31 Replies

  • I'm sorry dear. It's good you are here so we can hear. They say hold on to the good days and let go quickly of the bad days......meaning hold no resentment or anger or something that keeps you down. Diphenhydramine is an otc sleep aide. B uses this along with a scripted sleeping pill....Zolpitem or something...Also Sleepy time tea.....lemony with a supplement that helps induce sleep. It may also cut phlegm which was talked about on another post. I'm sure you know tricks of the trade, but one thing I remember the pt teaching Bruce is that when he wants to get up, he must have feet on floor with legs set at shoulder width makes a 90* at the knee with a slight v from waist to knee. Then he must look down with chin tucked slightly to chest. This helps the balance to now raise his torso up..... sort of like picking up something directly infront of you as you stand up from seated position. this method really works. Bruce has a tendency to fall backward when trying to stand straight up.....using this method balances rump to head.

    And excercise even though he just wants to sit, is a must for good sleep.....a walk down the hall, and back several times. Leg raises without gettin out of chair. ask you pt what would be good for your mate....but he's grumpy cuz of the PSP,,,He might be able to be somewhat relieved with some movement!



  • Thanks AVB, I feel better already. One of P`s problems is that he does not retain any information - I must say to him dozens of times a day to put his feet apart and push up from the arms of his seat. He knows how to do things correctly but either can`t or won`t .

    I know to walk away if things are getting to screaming pitch and although we have a long garden, I could hear him shouting `help, help me`. Just because I had left him for a moment while I cooled down - I dread to think what the neighbours make of it !

    If he gets an idea in his head, he will not leave it until he gets what he wants. Thank goodness for this site, it is a lifesaver.

  • dozens of time a day indeed. And then he surprizes the stuffin' out of me when he goes and tells me things I USED TO DO at school! Boy I must have bitched and moaned about it DAILY....sorry to put my bad memories in your longterm, B ! Oh well it''s all good before the day is over I will have told him at least 12 times "Hands to hips, and you won't slip" as he sends his walker 3 feet infront of him! ;?

  • Been there, done that, bought the Tshirt! Doesn't help you I'm sorry to say but you know we are thinking of you. Colin used to call help me help me. Very frustrating but in a lucid moment he told me he was scared if I was out of his sight. It must be terrifying for them to be out of control, unable to do anything they used to and having to really concentrate on how to do the simplest of tasks. I also have to repeat things over and over again. Every time I push the hoist towards him, several times a day, all he has to do is lift his feet onto the foot plate. I tell him what to do every time but each time without fail, he opens his legs so his feet go either side of the footplate on the floor. I told him I was going to tape all instructions and just press a button when I needed him to hear them. One way I have found to keep Colin in bed is to turn the TV or radio on in his room. I switched on at 5.15 this morning when he was climbing over the rail, I went back to bed for an hour getting up at 6.15 so I could have a shower and shave him before the carer came at 7. He was sound asleep when I shaved him and when the carer arrived.

    I find the baby monitor very useful as when I see him trying to get out of his chair, I tell him through the speaker that I'll be there very soon, or go straight away. I think he is reassured knowing I can see him.

    Colin used to love visitors so I invited lots and still do. When he could speak more he would chat away to them and go silent when they had gone, a mixture of tiredness and familiarity I think. He didn't need to speak to me as he thought I knew if he wanted anything anyway.

    Feel free to rant whenever. I hope this week is better for both of you.


  • Abirke and NannaB pretty much covered it all!. They are so great to talk to and extremely helpful. This is all so scary and sad, watching D go downhill and knowing I can't really help him that much. He is very hard to deal with already but I still try to keep my temper, He can't help it and needs me to be compassionate and understanding. Praying helps. Tomorrow we go to the VA for a meeting to hopefully get some help or at least learn about what might be available as he begins to need more assistance.

  • goodluck at the VA hope they understand what PSP is.......tell them it's Parkinsonian ....give them a little idea of what this beast is like.....

  • Thanks. I think Parkinson's is diagnosis neurologist wrote since it is associated with it. Which is one VA covers. For sure at least we should get assistance with wheelchair and maybe bed, etc., for starters. After the day he had today, afraid we will need these things very soon.

  • We have found the VA helpful, but only after my guy was designated as having a "catastrophic condition." At first we were essentially told that he was too young, too healthy and too rich to qualify for assistance. Weirdly disappointing! I was fortunate in being put in contact after that with an administrator who was determined to help us. She guided me through the paperwork. Once it was established that psp is a terminal diagnosis, we were handed over to the palliative care team, which stepped right up. They have been great. Good luck!

  • Really, i have been in touch with the VA and they have offered nothing. You are lucky.

  • It is very hard to ask for help and be refused. It's sad and humiliating and infuriating. BUT I recommend your calling you nearest center and asking for their hospice and palliative care office to see about getting the catastrophic designation. We got turned down first, too. Good luck to you.

  • What would hospice do? They wanted to put him there when he had the UTI and were such pains, that is when I called some rehab facilities. One turned me down and the other took him in. They were great. What do you ean by my nearest center?

  • Is there no VA hospital near you at all? Check the VA site online for your nearest care provider. The hospice and palliative care team has sent over a nurse and therapist who assessed our house for assistive equipment and are having a ramp installed for us. We are going to have a set series of PT appointments in home, which will be a big help. They may get us a stair lift - that's an open question for now. We have met with a psychologist, which is good for my guy, who sometimes would like to talk to someone other than me about what he is going through. Their doctors are coordinating with our GP. They have eyecare, too. They subsidize some hours of respite care, which we have not asked for yet, and may offer transportation help and some occasional companionship and home care, and some partially subsidized cleaning, too. We just started with them. As our needs grow, they say they will offer more help, including visiting nurses if my guy has any medical emergency. I have been so pleased at their helpful attitude. It takes such a load of responsibility from me to have professional backup. I have so often worried about all the things I might be failing to foresee and plan for. And the people we talk to are all very very pleasant.

  • Don goes to the VA clinic twice a year to get his meds. He also sees our private primary and neurologist. Have spoken to there social worker and he said nada :( Is the palliative care team from the VA? There hospital is an hour away but he is being seen by the Dtr who really is good. Should I get in touch with her?

  • I think you should ask if there is a hospice and palliative care team, and see if your husband qualifies. They might not be aware of the "catastrophic" nature of the psp diagnosis. Can't hurt to ask.

  • Ask who easternceder? I am so tired of making calls and getting no where.

  • No wisdom to add to above but I'm here too ! I often think C. is like a petulant child and also despair at how little he retains.

    The only way I can keep my sanity is by thinking how much worse it is for him.

    Hope things improve.

    Jean x

  • Same thing here.

  • Hi all sorry some of you are having a bad time, NannaB thank you for your comments you have been there, and we are approaching it soon, George kepts saying help me help me all the time, it does grate on your nerves, I also said to the children I don't know what the neighbours think.

    Also not had a good weekend, George would not get up yesterday, finally managed to get him out of bed at 6.30, to help me help me, he would not have a shower, feeling exhausted. Sorry to go on but life is not good at the moment,everything is closing in.

    Have a good day everyone Yvonne xxxxxx

  • Well heres a big hug closing in on you just to take some of the load....and you know what< abig for George....I wonder what is a good remedy for the "Help Me" effect...Maybe take him to a park where children are running I know executive functioning is minimized , but if he could see people taking chances by running, swinging ...kid stuff...may be he would be able to feel the safety of his chair...I don't know I'm trying to always think how to help B many thoughts never used or don't work...but gotta keep thinking...Watching kids play actually reenergizes me! hahah

    Good luck good Day God Speed


  • Beginning to think there has to be a full moon for all of us to having a bad week :)

  • As Nanna and other have said ! Unfortunately this is what happens . I use to say to John. I was going to tape a big sign in my forehead "WAIT ". On it lol .

    it is wearing having to repeat the same things over and over , the caking your name , maybe the T. Is on so you cannot always her and even if you reply that cannot hear ,

    you do have to have the patience of a saint , that's something nine of us are 24/7 .

    when u prompt only give one option . if you still cannot get a response change the way you say it . for instance to get John to try and raise his head a little . don't say lift your head up ask him look up or lift your chin . but now all at once lol .

    when things get too much start singing and maybe try to get them to join in , It will lift the mood

  • I'm new here. Grateful to have found this forum and the information on PSPAssociation. Husband Howard has PSP after years of diagnosis of Primary Progressivs Aphasia, then 2 1/2 years ago he started falling and then the eye symptoms. HIs neurologist says the PSP is the mail driver now. He has been in assisted living (we live in the USA so some of our terms are different) for past 10 months as I could no longer keep him safe at home and I had reached my limit of stress.

    What helped me when he was at home, dealing with the impulsivity and lack of judgment you are describing, I would say to him that the damagein his brain made part of his brain act like a 2 year old. Not that he was acting like a 2 year old, but just where his brain was damaged was acting that way. So it helped me to remembert that he had no control of this behavior that is so vexing, but that we together had to protect his safety. Depersonalized the behavior.

    Getting proper support for us as carers is so very important, too.

    Now I deal with getting proper information on the more advanced stage he is in.

    Good luck to you all, and thanks for letting me join in. I hope I helped in some small way.

    When it all feels like it is TOO MUCH, remember to BREATHE! It works! Prayer helps too.

  • Welcome. Sounds like we will soon be asking you stuff. B is still able to live at home but I am here 24/7 No other caretakers but B can walk, eat, use the bathroom....All with falls, assists in getting up, constant reminders how to walk, stand etc., chokes, spews and the and a cramped bathroom with the 4th new toilet (they don't take kindly to a 180 lb man falling on them while sitting!)So agin welcome hope your husband has the comfort and safety he needs. Hope you find the emotional strength you will always need to get on. Keep writing.


  • Nanbabs sorry P being the equivalent of a terrible 2 yr old. M luckily no longer tries to stand by herself but when sitting and I am elsewhere in the house, decides to straighten rigidly which puts her bottom on the edge of the chair so when she relaxes she ends sitting on the floor with a bump and I am back in the room Asap leaving cooking, washing etc. I am getting used to burned grub. I used to release frustration by kicking something inanimate, luckily no pets. Her communication is so poor friends tend not to visit anymore so social contact very limited. Glad you still have them visit, cherish them and P's reaction, though frustrating for you, at least means he is good for a few hours. Sorry to preach but PSP is not a sociable problem. Try to enjoy the good times and give yourself some me time in the bad ones easy said. Best wishes Tim

  • Amen the way It sure doesnt sound like you represent your Post Name very well....I can just see you making dinner, washing and cleaning up the newly made mess!....Oh and how is grub supposed to be eaten....have a pan soaking right now that even the dog couldn't "remedy" ahahha


  • Oh my goodness it feels like I have written most of these posts myself, the similarity in all PSP sufferers is frightening! Keith does all of the things that have been mentioned especially what abirke said about standing from a sitting position, that's exactly how I manage to get Keith up, works most of the time but occasionally he rears backwards and I take all his weight (which is not good for my back!)

    Last night as I was getting him ready for bed he started to try to tell me something but got completely muddled up and told me three different things all in the same sentence but in the wrong order! Like many of you have said its like looking after a naughty child or giant baby!

    I also found him out of bed this morning, he knows he's not to do that on his own, he has a bottle by his bed to use at night and he said he'd forgotten about it!

    It's so frustrating and very hard not to lose it but I find biting my tongue and imagining how awful this must be for Keith usually calms me down!

    But we all struggle on don't we, doing the best we can possibly do, sometimes better than others but we are only human after all!

    Love and hugs to you all!


    PS Looking forward to Jill's online party!

  • Hi NanBabs, no wise words! Just sending you a big hug across the ether. 'Cause I know you need one!!!

    Lots of love


  • DITTO! How are you doing Heady? Things a little better these days? I think I will go crazy before the end of this. Some days I am so patient and understanding. Other days I just want to run as far away as possible. Then other days I just want to shake him until the crazy laugh/moan stops. Scares me so much.

  • Think we should have a t-shirt printed, but can't think of what to have on the front. What I'd like to write, you couldn't make a large enough shirt. Any thoughts anyone? Perhaps the PSPA could run a competition and get the winner's logo on their T-shirts!

    Lots of love


  • Thank you to all who sent replies to my post. It is a comfort to know that you all understand and are sympathetic.

    My sons are great and although they know what their Dad can be like, I am reluctant to tell them about all his bad behaviour because I want them to retain some love, respect and happy memories of him. He enjoys seeing everyone but soon after anyone comes he invariably asks to go to the bathroom !

    Getting some more help to put P to bed maybe will provide a little relief, so I am getting on to the care company right now.

  • Gee and here I thought I was alone with my issues. He won't listen to anything I ask him to do for his own good. Wake him up at 8:15 so that he can get dressed, I know it takes a long while and watched him change his undies. The last time he fell he lifted up his leg and of course with rotten balance fell. I keep on telling him to sit on the bed to change but he just won't. I am petrified he will fall again and end up with a broken hip. Tells me he is so tired, gets into bed and then yells for his meds at 9:000 which is his last dose for the day. I am tired legs, back hurt, toes numb, feel like a zombi dealing with a mule. Oh yes, if anyone should ask him how he feels, he always says fine. Your fortunate that you have a carer to help you. BTW, is extreme tiredness part of PSP. He always wants to go to bed or rest on the sofa. Can't get him to do his exercises either. Grrrrr, TY all for being here. xo

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