Carers dilemma

Every day my wife seems to able to do a little bit less - and asks me to do more for her . I understand the decreased mobility and fear of falling etc but sometimes I feel she is just giving up slowly but surely - any day now I expect her to ask me to brush her teeth because she can't do it for herself .Is it just that the more I do the more she can't do ? Should I try to make her try to do more- it feels churlish when she is the one with PSP and having to deal with so much . I suppose I am wondering if the growth in dependency is a two way process and am I in some way encouraging her to be more dependent on me than she needs to be or is it just the inexorable onwards march of this illness.

A silly example of this is she might drop a handkerchief by her chair and although I am sitting on the sofa a few feet away she will ask me to pick it up despite the fact that I have got her one of those long arm grabbers . She says she can't work it and I know she has problems with anything vaguely mechanical now .I also know that if she gets out of her chair and tries to bend to pick it up she will most likely fall over so up I get and pick it up for her .All this sounds very trivial but it is invading every aspect of our lives from cutting up her food to putting her hat on when we go out .

Everyday she bewails the fact that she can't do the things that she used to be able to do and gets very emotional .So what's best - push her harder or just shut up and get on with it ? Any advice most welcome .

Georgepa ( in frazzled mode )

41 Replies

oldestnewest
  • George you wife sounds just like my husband, I feel the same are we doing to much, could they do more for themselves? We have a pyso coming in once a week and he will do things for them but not for me, it is so frustrating, it costs me seventy pounds a time, but I feel like screaming when he won't do it for me.

    I could just be in the kitchen he will call me, when I go in he says he can't remember what he wanted me for, and ever time I sit down he wants something, then he keeps saying help me help me, I am up and down so much.

    Pyso said she does not think he should be walking with the walker unaided, and today he fell over and hit he's head.

    But today I was in the kitchen and when I looked into the sitting room he had taken himself to the toilet, so he can do it, maybe they are frightened of falling over, not sure, but it is hard. George is a nightmare with his medication, is your wife ok with medication? George has high blood pressure, diabetic, so he needs to take his medication, he seems not to understand that it is for his own good.

    Maybe we are doing to much because it is easier, it's a hard thing to understand, keep strong George spring is nearly here, at least you get out, George does not want to go out so we are stuck in doors most days, he goes to centre twice a week, cheer up George xxxxxxxxx

  • i am desperate to get out whilst i still can and go to TAI CHI on Tuesdays; parkinsons and choir rehearsal on wednesdays ; hair do on thUrsdays ; and the hospice )(last day was yesterday) on Fridays

    but i am still leaving my partner indoors and he will not go tout anywhere iwhtout me

    lol jill

    :-)

  • HI GEORGEPA WELL MATE YOU HAVE PICKED A HARD ONE THERE I TRY AND DO EVERYTHING MYSELF ALL EXCEPT PUT MY SHIRT ON AND THE DREADED BUTTONS OF COURSE AND GET MY SOCKS PUT ON BUT OTHER THAN THAT I STRUGGLE TO DO THE REST MYSELF I MTHINK TY IS GOOD FOR ME TO KEEP TRYING FOR MY OWN SAKE MATE BUT AS YOU KNOW EVERYONE IS DIFFERENT IT WOULD BE EASY TO SAY JUST DO THIS AND THAT OR GET THIS AND THAT I BELIEVE

    SHE SHOULD TRY A BIT MORE BUT THERE AGAIN I DO NOT KNOW WHAT HER CAPABLITIES ARE BUT SHE SHOULD AT LEAST TRY BECAUSE IT WOULD MAKE YOUR LIFE A WEE BIT EASIER ====== SORRY MRS GEORGEPA BUT THATS HOW I FEEL ABOUT IT ===========I KNOW K-HOW EASY IT IS TO GIVE IN AND LET SOMEONE ELSE DO THINGS FOR YOU BUT YOU WOULD GET SOME SATIFACTION OUT OF DOING IT FOR YOURSELF BUT THIS DOES DEPEND ON YOUR CONDITION AND AS I SAID I DO NOT KNOW YOURS === SORRY I CANT BE OF ANYMORE HELP GEORGE =PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

  • As ever wise advice x

  • I told my husband yesterday that I felt I was doing too much for him but he has difficulty now moving his arms in a good position when I'm trying to get him dressed. He rarely manages to reach the tissue box placed right beside him. He can hold a cup and manages to drink thickened liquids but I have to feed him. In the past he had many falls from his chair whilst trying to pick tissues off the floor so I also spend a lot of time picking up for him. I never manage to see an hour long programme on TV without having to do something for him. I totally understand what you say about invading our lives. Colin has to have all his food liquidized or squashed through the ricer, more washing up, and he still wants gloves on when he goes out. I thought that was something he could do himself so left him for a few moments, strapped in his wheelchair, having given him his gloves. After a few moments he did his funny humming laugh and held up his hands. They were on the wrong hand with two fingers wedged in each of two glove fingers and his thumbs squashed where his little fingers should be. I had to laugh as well and when I helped him I wasn't much better. It's not easy getting gloves on someone who doesn't put his fingers where you want them to go.

    So Georgepa, my advice, and it's probably a bit defeatist, is to ask her to do things but when she doesn't succeed, do it yourself.

    Nanna B,

  • nanna b colin your in it again mate anyway I am down the gold coast which is like a seaside resort we have an apartment down here for a week ] in fact we go home tomorrow but its been lovely

    my daughter donna have been taking care of me and my wife stella I liker to look at the shopkeepers faces when I go in their shop like a drunken monk and I can feel they are on edge

    until I am well clear of them especially yesterday when we went into an antique shop with all this glass wares around anyway I only sat down in there while my wife and daughter had a look around im sorry to tell you that everything was safe while I was in there anyway colin take care

    keep your fingers in the right place in them gloves mate otherwise you will never learn how to pick your nose I know disgusting but I wasn't sure how to end this em to you so take care mate look after nannab as much as you can I know you try mate and do your best so see yer matey stick with it -------------- peterjones queensland Australia psp sufferer

  • Hi Peter Jones, we are pleased you had a lovely break and it's good Donna was there to help you. The look you see on shop keepers faces is probably the same look I get when I take Colin into a shop in his electric wheelchair.Shops are only designed for fit, walking adults.

    Today we had a partial eclipse of the sun. On the TV we saw amazing pictures and dark skies as the moon covered the sun. Here we had thick cloud so never saw a thing. It didn't even go very dark. It just looked as if there was going to be a storm. Apparently we had 85% coverage. It's going to be a long time until the next one.

    It is getting a bit warmer and we put the clocks forward an hour next week so it will be a lot lighter in the evening. Not BBQ weather yet though. Soon Colin will be able to go out without gloves so nose picking will be easier.

    Stay upright Peter Jones and don't give your dear lady wife too many frights.

    Nanna B and Colin 👍👍

    Xx

  • hi nanna b and colin hows it going pretty quiet your end matey well mates we have just got home from the gold coast it seemed like we had been away for months instead of just a week but we had a real good time we never had to do as thing but I think donna will need another holiday to get over this one not only did she drive us around she done the evening meal and breakfast

    well all the cooking when we never had meals out and the washing and ironing

    got all the shopping when needed it and sorted everything out with the estate agent

    and took my wife out shopping looking at dresses which I hate doing I expect you were the same colin weren't you

    go on mate you can tell me I wont say anything matey not a word to anyone

    and talking about staying upright mrs colin

    ive had two falls this week one when I got down the coast and another when I got home just now just hot my crust on a bed linen box that knocked some sence into me I can tell you well you two very nice people I will say goodnight to you take care old mate and be good see yer peter jones queensland Australia psp sufferer

  • I hate to tell yu but if yu want the truth I'll tell yu it was my husband / the PSP what yr describing is what my husband did tooo a t do you not have all the info on the progression ?????? Ye wife's behaviour is out of her control Such a slow painful thing to watch Something take over your life I went with what was happening to my husband It was tough I REALY did all I could to make his life as good as it could be With the disease And it gives me some consolation Knowing I did my best. For the guy I loved for 51 yrs I just Thot a lot of the time I could be the sick one !!!! It's a bitch of a disease but don't let it do yu in. Stay strong As yu can I hope this helps a little 😃😃😇😇🌺🌺

  • Hi Georgepa,Madeline is in year 11 and completely bedridden or almost,as it,s hard to know where the bottom of this slide is.,most times,in the hope of bringing on some of the past lives we had one wonders if a little push is necessary, but no, psp moves forward.,what was your dear wife like b4 this,if she was very self-sufficient it is the illness takeing it,s toll,.my uncle use to say,life is just a test for your next assignment ,love Rollie

  • George I have exactly the same dilemma. And here's the thing, when we have guests, he does much more for himself. Twice in the past month we have bumped into friends not seen for a while and both said how well C looks and how I have lost weight and look exhausted! Made me see things through fresh eyes. Unfortunately I don't have an answer. Except I am now trying to take better care of myself! And we have a guest who flew in from Istanbul last night and goes back today so I must get C showered and dressed before she gets up.........................it never ends. You just have to get through however you can. Basically plod on. P

  • Some test eh ?

  • hi georgepa

    it is a v difficult one this is!

    i try to do too much 4 myself and fall over trying to pick anything up or just over- balance and over i go - falling out o f my wheelchair is a good one - my partner cannot understand how i can do that but it is easy for him to say that cos i do !

    and iet really upsets me every time i fall - and it does him too

    getting dressed si a real problem fr me now and my carer helps me mON - FRIDAY But i am on my own at weekend s with no one to help me as my partner says i can do these things myself - not true otherwise i would note ask him to help me

    so it is a v difficult situation tha t we are in as PSP people and carers!

    i cannot really give u an answer to this one

    lol jill

    ;-) and hugs and xxxx to u and veronica and of course your daughter Katy

  • You are a brave lady Jill - I don't know how you manage it . Veronica cannot dress herself - she does help me a bit as I dress her. Pants and trousers are the biggest problem as at some point one has to let go and that is danger area . Both of us can end up in a heap on the floor !!!

  • Hi Georgepa, I had the same problem putting Colin's pants and trousers on him so I phoned the OT to see if they had an answer to the problem. They did. We now have a standing hoist and it has solved several problems. With a strap around his waist, he can hold onto the frame and stand on the base. If he let go, he can't fall but he is very strong in the arms. It also enables me to clean him after using the commode, apply cream and transfer him from chair to wheelchair. I was finding my arms, shoulders and back were constantly hurting from trying to hold him and dress him but now the pain in my arms and shoulders has gone. My back still twinges from all the bending but I no longer have to lift. Your wife may be tiny and easy for you to lift but a standing hoist would make putting on pants and trousers easier.

    It's a beautiful day here today and by the look of the weather map, it is even better where you are so I hope you are able to enjoy it. we went to Hastings yesterday and I thought of you as on the way there we saw many banks of primroses. They brightened up a very dull day. No sight of the eclipse for us.

    X

  • Thanks NannaB I will follow that up - my wife isn't tiny but she is quite tall but she stoops right over which makes balancing doubly difficult. And yes we did see the eclipse- quite spooky although not as spooky as 1999? when we were on the beach in Lyme Regis and suddenly all the gulls fell silent as did the huge crowd - there was a primeval feeling about it as though it was an omen - all very strange . Glad you saw some primroses .

  • We saw it in 1999 And yes it was very strange. All the birds suddenly stopped singing except for one very loud blackbird that sang its heart out in the darkness, then as the sun emerged again, the dawn chorus started for the second time that day. Our eldest son, who was 24 at the time, was in the UK briefly after travelling alone abroad for several years. He decided to hitch hike down to Cornwall for the best view of the eclipse. Obviously he ignored our suggestion that he took the train, even after we offered to pay, " Mum I've hitch hiked round the world, going to Cornwall will be a doddle". He arrived the day before and pitched his tent on top of a cliff, along with hundreds of other like minded people. The next day he woke up, emerged from his tent in bright daylight to hear everyone saying how amazing it had been. He had slept right through it.

    When he came home he said if he had taken our advice and gone by train, he wouldn't have been so tired. I was proud of him though.....for being honest. If I had done that I would probably have made out I'd seen it.

    He travelled for 10 years altogether, cooking around the world and is now in Suffolk, the owner of an inn/restaurent and a Pizza restaurent.

  • Wow I love you that sounded just like my story with Aunt Bev she would get kick out of blowing her whistle (cant yell at me whistle so I can hear her ) for me to get her something or do something that was right in front of her I am sorry I dont mean to laugh but I am, after a while I finally caught on took some time first because i would always think in my head what if that was me, not know more HAHA I have bev do all she can the more she has to move the longer she will last if i do everything for her she will just set there, her hands move so what ever she can reach like in the shower she is stuck doing , I keep a close eye on her dont get me wrong or think I am mean. I would stand back where she could not see me and I was amazed at how well she could still do, and then when she would hear me it would be back to I cant , see my aunt is no dummy and she is very slick I wouldnt have it any other way I love it now before she had me wanting to pull my hair out , anyway sorry for going on just took me down memory lane but have her do all that she can as long as it is save and by the way they make the things you grab stuff with ( I call it her getter) for people who have a hard time with hands so it is real easy to use. I thank you for making my day start with a smile keep her going with kindness and lots of love my prayers are with you both

    hugs kryste

  • Georgepa, yes I know what you mean, my wife has lost the use of one hand so some things like cutting up her food I know she can't do but there are things that she could do with a bit of effort that she leaves to me.

    I agree with you that anything vaguely mechanical she leaves to me, like putting on the TV or changing channels. (I do leave her to put the washing machine on even if she gets it wrong sometimes!)

    I used to leave her to go to the toilet on her own but there have been a few accidents which involves a lot of cleaning up so now I help her, its less work!

    Most of the time I just do things for her, probably not the best way but on the whole its easier.

    Sorry not to be more helpful

    John

  • Georgepa, I'm with all the others on this and would just emphasize YvonneandGeorge's point about maybe doing too much because it is easier. Roisin became very dependent, against her natural inclination and often very unwillingly, but there were times when I would take on something myself just to save what I thought was precious time. For example, wiping the basin clean after hand washing or teeth cleaning which Roisin would do instinctively but very slowly so I used to take the cloth and do it for her. I wish I had not. In general though, you cannot go wrong if you assume that Veronica genuinely needs your help - even if it is to do something for her that on another occasion she may be able to do for herself. It's just the nature of PSP. And one final point - you probably will some day have to help her to clean her teeth, possibly to do the whole thing for her. Don't be surprised if you cannot get the toothbrush behind her teeth. I thought at first that Roisin was being cussed and clenching her teeth shut but fortunately soon realized that she could no longer open her jaws in the normal way.

    Bon courage!

    Christopher

  • Christopher, my darling hubby has managed to break 3 electric toothbrushes by clamping his teeth shut onto the head. I managed to get them replaced as we had only had them a short time but if this one goes, we will be back to hand brushing. If only I could brush them when he is asleep.....he always sleeps with his mouth wide open.

    Nanna B

  • NannaB, my wife's physiotherapist suggested using a child's toothbrush. This certainly improved the cleaning of the front of Roisin's teeth (more manoeuvrable, less intrusive etc) but I never managed to get at the back of her teeth. Instead we used a teaspoonful of Fungizone, a pink liquid that Roisin was supposed to use as a mouthwash to clean and to prevent harmful bacteria building up at the back of her mouth. Sometimes I think she just swallowed it, no harm, but usually it worked.

    Christopher

  • Thanks for the tips. I have new children's toothbrushes I keep here in case our grandchildren forget theirs. I'll try the mouthwash as well.

  • Georgepa..as the airlines say..."put on your own oxygen mask before your child's".

    My wife has only had PSP 2 years, before that she was as fit as anyone.

    I try to let her do things but when it goes wrong, as it does, the work for me is greater than if I had helped in the first place. She can hardly do anything by herself and with no speech it is very difficult for both of us. She did not wait for me the other day before getting out of the chair, next minute she had almost chopped off her ear as she fell against the radiator, the result was 6 hours was in A&E.....She has just broken her wrist by falling and not waiting the few minutes for me.

    I try to manage the caring roll by deciding if it goes wrong what is the load on me.

    Generally I help most of the time. I have recently handed over to some morning carers who get my wife ready for the day. During that time I have a breakfast and take the dog for a walk.

    I am not a natural carer, it is hard....The summer is coming...winter makes things seem much worse.

    Hang in there and do what you feel is right...what else can you do.

  • I think most people want to be as independant as they possibly can . I know my husband always was .

    in his case from the start it was the smaller hand movements he had trouble with . I even use to koine that he was mechanically dyslexic . he couldn't use a tin opener , push his fork into his food etc . I could go on and on ,

    he asked me one day if I would start to make any decisions , no change there I couod usually get round him anyway . Lol

    gradually I have had to do everything for him , sometimes it was be cause it was easier for me in the long run but at the same time encouraged him to do as much for himself . depending how he was on the day .

    he also asks me for somethIng after I have left the room. apart from that I cannot hear and understand him he cannot hear me . it's very frustrating and we wouldn't be normal if we didn't lose our patience on times . I know John understands when I do ,

    I love I've him very much and he is the last person I want to hurt and upset .

    parkinsons does cause anxiety but it's not all down to that , the spacial awareness is very poor , he will reach out for something and miss it completely . do the finger test touching the nose . Cannot work out how to do something or what to say .

    keeping them safe as possible at all times is the most important for both of your sakes .

    whatever it takes . be kind and make time for yourself .

    I have discovered if I don't get a good reaction asking John one way I will try another .

    only ask them to do one thing at a time and don't give options . I do a lot of prompting , there again of one word doesn't work try a similar . For instance , if you don't get a result after asking to raise his head I will change it to lift your chin up .

    it usually works .

    sometimes his mouth will freeze The. o stop and ask him to say BA BA BA , he can get impatient but generally goes along with this ) it will then open wide .

    Another one of my tips !! I have a spouted plastic mug and place a larger straw into the spout , cut it to the size you want . I found some straws in the RANGE with larger opening I thought to accommodate thicker soup for instance . if I am careful it works to give John a drink , I use thick and easy in all drinks .

    I will use a n ordinary straw pushed into the airhole when he is taking tablets "

  • This is exactly the dilemma I wrestle with. I talked with the consultant about the importance of doing things himself in order not to lose the ability. Of course the problem is in deciding whether doing things is more dangerous! We all have A & E experiences !!

    Sometimes C. does things and I get cross with him because its risky and other times I think why can't he clear up after himself.

    Personally I make decisions about pushing him according to my feeling at the time. It isn't always the best thing. I don't know what is. No-one does.

    For me its a big problem seeing him so opposite to the man I have lived with for 53 years. Also his strength varies from day to day - or hour .

    Co-dependency is interesting. I often do things because its quicker or easier, not necessarily in his best interest. I hate seeing him vulnerable and needy. I hate the fear and resentment it creates in me. I am not really a natural carer but do it with as good grace as I can manage.

    Its a terrible place we are all in and we can only do our best and accept that these torments are part of it.

    Oh dear !! That cheers us up !!!

    Have a better day !

    Jean

  • Dear Doglinton (Jean),

    I can really appreciate your comment about the fear & resentment building in you. It is good to know I am not the only one with these feelings.

    My husband is falling much more frequently now and I cannot get him up by myself. Right now I have a strained back from trying to help him use a walker. Our next step is a wheelchair, but that is so heavy & awkward for me to manage. And then there is the problem of a vehicle which can hold the wheelchair.

    Each day there is something new he can no longer manage on his own . I know it must be very frustrating for him since it is very frustrating for me to see him. And like you said about having to clean up after him, or just do the task myself.

    He looses so many items too. ( house key, cell phone, paperwork, etc). The doctor said this is caused by decline in short term memory. It is not only frustrating, but time consuming having to keep looking for things.

    I am trying to get him enrolled in adult day care now. I am the only care provider, 7 days a week, and I need some time for me. I don't like the idea of needing to place him somewhere, but realize he is wearing me down. This disease is so hard to handle. It is definitely not the life I thought we would have at this time in our lives.

    mwick.

    {\rtf1\ansi\ansicpg1252

    {\fonttbl\f0\fnil\fcharset0 .HelveticaNeueInterface-Regular;}

    {\colortbl;\red255\green255\blue255;\red0\green0\blue0;}

    \deftab720

    \pard\pardeftab720\partightenfactor0

    \f0\fs34 \cf0 \expnd0\expndtw0\kerning0

    \outl0\strokewidth0 \strokec2 \

    }

  • HI MWICK

    YOU CAN GET LIGHTWEIGHT WHEELCHAIRS WHICH ARE MUCH EASIER TO GET IN AND OUT OF THE CAR- I HAV E BOUGHT ONE FOR UNDER £200 (IN US $ TIAT MUST BE ABOUT $200) ITS NOT AN ELECTRIC ONE AS I WOUDL BE DANGEROUS WITH ONE FO THOSE OUTSIDE OR INSIDE BUT IS REASONABLY STURDY FO RHWNE I THROW MYSELF INTO IT ( 1 FO THE DELIGHTS OF PSP)

    LOL AND A HAPPY EASTER OT YOU = TA FOR YORU REPLY\

    jill

    hugs and xxxx ot u rand your husband

  • i am the same it seems when you give them an instuction they dont do i myself in the end just do it very tiing hope all is well with you

  • It would appear from other replies that many of us are coping with the same situation. When to push them to do stuff, when is it easier, for whatever reason, to just get on and do stuff. I am lucky that my husband is still able to get about, sometimes better than others but as yet it means we can get out and with his walker he can take our dog to the park across the road - now that is something he seems to relish. As far as doing stuff in the flat that is harder to get him to do a lot of the time. Although he is only just over 2 years into the condition - although we only got diagnosis last November - he has changed from the person I have known for over 34 years, that to me is the hardest, I feel like an unpaid carer/jack of all trades at times and it is heartbreaking and stressful at times. I know that his energy gets less around teatime and try not to push too hard. But I don't want him giving up too easily and when I ask him to do something and I get the reply 'I can't!' I will encourage him to do any little bit of it he can and usually he suceeds totally so I think its more being afraid of finding other things he can no longer do properly. Its a difficult one and one that others can't really help with as we know the other person best. Stressful - yes, causes pent up feelings and tears - yes, but sometimes to let it out is best. I hope you find your common ground too. All the very best

  • Hi everyone. Sadly, I can only echo how lots of people seem to be feeling. It's a vicious cycle, you want them to try to do things in the hope that they can continue to feel as 'normal' as possible, but in the end it often just leads to tears, frustration and resentment. A lot of the time my Mum falls because she either just won't wait for something, or is trying to do something clearly out of her capability. I try to explain that there's no need for her to do some tasks as I am happy to do it if it means her staying safe. Sadly things are progressing quite rapidly now so I am also brushing her teeth for her as well as all of the other things. I try to remember that she is ill, not deliberating being awkward. Some days its harder than others to remember that its the illness not the person.

    Good luck to everyone

    x

  • Hi Silky1409,

    That sounds a lot like my husband and myself.......

    D x

  • My husband always tried to do things for himself in the beginning and hated me doing anything for him. He would tell me he didn't need help but of course the disease has progressed now .(CBD) and over the last year he is unable to do anything at all for himself.........obviously not his choosing.

    I could probably say that, "he could try harder!"

    Don't you think that maybe it's the signals in their brains that get confused or just don't get through, so that one day they can do something and then the next day they can't?

    Don't you think that anyone with any kind of illness would rather stay independent and look after themselves if they could?

    We can't get inside their poor confused brains and I know it makes more work for us but I am glad that I am the one doing everything for him and not him having to do everything for me!

    Sometimes he completely forgets that he can't walk now and tries to get up out of his chair which gives me nightmares!

    D x

  • Des PSP has been in a care home while I had a hysterectomy(cancer)First visit after op he was naked and insisting it was midnight all very difficult I felt to blame for being away. now I know it was a uti and today he is normal for him. He was vary caring today and very undemanding telling me not to pick up the dropped tissue!George you can't get a hysterectomy but do tell her of your ailments as they come along I told Des I will need him during chemo treatment he said he was no use and I told him I need someone to moan to and he has stepped up for it so he has agreed to my moans and groans that is marriage I guess Keep it up George Px

  • Oh Georgepa, it could have been me writing that ! All you say sounds so familiar but I try to think of the consequences if P has a fall and does some serious damage, it would have repercussions for both of us so I try to err on the side of caution and convenience.

    Tonight after dinner and after P had finished, I sat down to enjoy my ice cream and P decided he wanted the toilet right then. He didn`t, but he does that all the time, waits till I`m busy then demands my attention.

    I used to think I was the most patient person but recently it doesn`t feel that I am !

    NanBabs

  • I think the Pope would make us all saints if we behaved as we think we should but we can't and don't and I don't suppose that we will be damned to hell fires because we haven't but it doesn't make you feel any better about yourself when you lose patience does it . I just feel guilty .

  • My Auntie has this horrendous illness, she was diagnosed in 1995 and the consultant gave her a prognosis of 7 years and still she is fighting hard. Her independence in all she can possibly manage is to be admired. If I can be half that independent at 80 without the PSP I will be pleased with myself. I can only speak for her, everyone is different but I agree totally that if someone is very independent before PSP takes hold then they really can not do things for themselves as the disease progresses and I know I will do all I can to make that journey as easy as possible for her.

    Love and strength to you all in this battle

  • GeorgePa. I'M NOT THE ONE THAT NAGS ,MY DAUGHTER IS. SHE DOESN'T WANT TO BELIEVE THAT SHE IS WRONG, & I NOW SHE IS IN DENIAL.. I'M WORKING ON A PLAN MY VISITING NURSE IS GOING TO ASK A SOCIAL WORKER TO CALL ON BOTH OF BUS. SO SHE CAN HELP THE BOTH OF US . GEORGE I NEVER NAGGED MY HUSBAND.

    THANKS FOR ALL THE ADVICE GENA

  • to all well everybody should be feeling quite good now you have all this out of your system I have read all the answers and questions from you all and im very sorry for you all believe me but after all this we are still stuck with the problem aren't we until they can find a cure for us psp people Im afraid it will be the same thing letters and posts im not a whinging person by nature but what I read does make me feel bad about having psp and I am beginning to think that im a burden on my wife and family which I know I am but more of one even though do my best to help out now I am speaking or writing on behalf of the other people who have psp and maybe cannot use a computer or tell you how they feel because if they would read some of the articles that are written here they would be feeling very depressed its not our fault that we have got this dreadful sickness and its not your fault that you probably at this time of your lives should have to do what you do for us because lets face it the time is sadly against us or majority of us for this to happen now what about one day of doing good posts forget about psp and all the trouble it causes money wise and marriage it puts a strain on everything I hate to say but from tomorrow shall we try and make it a real good day with nothing about psp in and just good thongs that has happened to you

    well maybe a little bit of psp then something that will make you all have a laugh I think t will do us all good to have a laugh peter jones queensland Australia psp sufferer sorry about the ranting

  • Hi Peter good thinking I shall adjust my " thong" which should give my wife a good laugh and probably make my voice go up by several notes .And I shall envisage all those who frequent this site having a "thong " Sunday too. You.ve cheered me up no end - thanks .

  • I feel exactly the same way. It seems things that could be done yesterday or at night can't be done when I am available. I am hearing help much more often and wonder is it me or the disease?

You may also like...