Frustration ++ does anyone else have battles over timing. Hubby diagnosed with PSP 3,5 years ago. Mobilises ( unsafely / independently) around house and waking aid/ wheelchair outside. So I will ask what time to eat We agrees a time, I remind him 15 mins before we will eat Then he picks up a book or goes online or turns TV on and cannot be disturbed for food. Same thing happens if we are going out or someone coming over. Is it about power, asserting independence ?? When I ask him he just says I am bossy!! Maybe I am bossy, but every meal is cold, I usually eat alone and then help him an hour or so later. We are late leaving if we go out or he is ' unavailable' for friends or family. Is thus just PSP and if so I would really welcome any suggestions this daily occurrence is driving me mad!!!! Wouldn't mind but most outings are for his benefit to hospice, hospital to see his family/ friends.


18 Replies

  • It could be a him thing...it could be PSP....My husband was insistent on many things...how to park the car etc....I think you might look at him not so much as your husband but sort of separate yourself from the personal affront and figure out solutions to the problem....You, "Dear you say that I am bossy....we have talked about things that we both agree upon. Is there a change of how you want to take dinner? Maybe in the living room....or do you mind eating it cold since your refused it at dinner time?" And for the when it's time to go, tell him ya'll have to be there an hour before you really do!. Give him that hour of control where he can do something you told him not to...or visa versa.....well you know what I mean. I have to reassure you in all of this that this may be part of the layers of PSP which will dissolve and hopefully soon he will not be so stubborn. B was never cranky but was set in some of his ways.....he's mellowed and I probably have as well...

    These are the only words I got...there's always something! it is like parenting except our children grew into a deeper understanding and development....The biggest thing is step back and don't take PSP as a personal affront; but what it is, a damn neurological disease!

    I'm sorry I don't have better words for you . Good luck cheer up take some deep breaths and relax a bit.



  • Deep breaths are all important for carer! Yes , have tried both AVB' s suggestions. Both can work but still so frustrating when you take trouble to make a meal and he does not come.

    With my man, I came to realize it was an increasing effort to get up and go to the meal table so I arranged for them on his knee. Previously when he was getting his own sandwich meals, he got later and later in day so I stepped in to do them for him so gaps between meals were better, and meds with them!

    Think it is a natural progression and just needs managing to carer's liking with minimal fuss!! And minimal opposition from the loved one!

    Hugs, Jen xxx

  • Yes we often eat in front of TV now no problem with that for me. I think it is as you say a progression the norm!!


  • Oh how I sympathise, but wish I was back there! S use to be exactly the same, but that wasn't anything new, he was long before PSP was invented. As things get harder for them, so you are going to be in the wrong. That goes with the territory.

    I wish I could give you words of comfort, but I can't, as our loved ones get more dependent, so we grow onto this big ogre that rules their lives. Nothing can change this, only you recognising the fact and some how coming to terms with it. If you learn the secret, let us know, 'cause we are all desparate to know!

    Sending big hug and much love


  • Thank you. The counsellor at Hospice suggested it was a power struggle so have really tried backing off!!! Deep breathin exercises I think!!!


  • Oh dear what this bloody PSP does to us all, it is like they are our children, telling them what to do, you have to raise your voice, otherwise they take no notice, we eat our dinner at the table in the kitchen just after 6 o'clock, don't give George a choice, he is out of his chair into the wheelchair for his dinner, same with breakfast, George says I am bossy, but I take no notice, I think they do it to try our patients, which mine are on a short fuse lately. I agree with what the others said tell him you are going out and hour before you go, so he will be ready xxxx

  • Thank you such a relief to realise it is not just me being bossy.


  • I so sympathize with you! Yes, it is very difficult. Almost like dealing with a very unruly child. I really believe it is the PSP. My husband can be very childlike and so easily distracted. Time doesn't seem to mean anything. Can't seem to remember that he is hungry. I am called "bossy" or "bitchy". After a while he forgets about it so I try to forget as well. Hang in there. I know you are doing what is best for him.

  • My Liz is the same no matter how much warning I give. No matter how many count down warnings with questions of do you need this before you go, she will always have last minute impediments which put us under time pressure.

    It drives me mad.

  • My wife tried this for a short time, but I think her ex-nurse training kicked in and she would comply with meal time (TV meals helped) with a disgruntled sigh or some argument but her PSP had a number of steep declines and this particular plateau in behaviour was short. I like Heady would love to get M back to those days her silence and disquieting inaction are another horror. Though she loves the outside and seeing her grandchildren so glad for small things.

    Hope you can come to a compromise and adapt to your hubbies PSP stage. Being a Carer is one of coping with whatever PSP decides to throw. Best wishes Tim

  • Thank you to everyone who replied. It is so helpful to know that we are not alone in this horrible struggle with PSP and everything eventually moves on.

    This site is a sanity saver😊

    Tippyleaf xxx

  • Tippy...I have read several of the responding notes ...I am in a different place....wife has had this for total of 5-6 yrs ...diagnosed 2 +..I don't believe they exert ANYthing pertaining to a power struggle ...they have No power ..they are victims of a disease that NO-one knows about (including 99% of medical people ).I give my wife of 45+yrs every consideration I can muster up....Yes ..occasionally I spout off or give her some sarcasm but then I compare the 2 of us .....thats when I have tears ....I will do this til she passes or I pass or until I can't....Yes its a shitty way to plan a retirement on , how-ever there are far worse and less noble causes to have to endure than this .....my advice ...keep doing what your doing ...prepare food tell him, and if its cold when he eats it ...so be it ! I feel my wife brain is fairly well intact ...80 % but some rational is way out there ...just go with the flow ...good luck...

  • We all have some aspects of this at different times. I am bossy but curbed it a lot. Now I just have to be. Chris loves his food and is always ready for it. At present I am often reminded of Bev [ nanna B ] at mealtimes. She said the sound of our cutlery on the plate sets his bowels off !!! Too true.

    Chris is a bit further on than your man. I just take charge and start dressing him to go out.

    He asserts his independence by refusing to talk to me sometimes but in general is amenable. This makes it easier caring for him but shows I have lost a lot of the feisty man.

    Love, Jean x

  • What is it about that sound that gets their bowels working. Or in S's case, false alarms???? Still I don't suppose things have changed, it use to be the dishcloth being waved around!!!!!!

    Lots of love


  • So true !


  • I shall await tbat next stage with a good supply of loo roll and I hope a little more patience than recently!!

    I have found such a huge relief and support in sharing my frustration maybe that old adage a burden shared.....Thougheven the Hospice counsellor doesn't" get it "like people on this site. Guess you have to live it to understand!! Xxx

  • It is a hard balance to make them feel like they still have what little control in life they do and not making them feel like you pity them and cave in....No one knows your mate like you do, what about asking him what time he would like to eat and arranging meals around it??? You may have to eat a little later, or earlier, but that might give him the dignity he needs for now..unfortunately, the time will come when he can no longer fight you on these little things so be happy and make him happy for what time you have......

    peace to you

  • Thank you. I do agree with what you are saying. So challenging for all concerned


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