Exasperation

Does anyone else have any experience of the following. Ever since diagnosis 18 months ago my husband has been in denial, so we have frequent outbreaks of ranting on about the doctors are talking load of rubbish, they know nothing , it's time they found a cure, they have the medicine to help me they just won't spend the money, I'm going to tell them I'm fed up with this they need to sort it ......and on and on. I explain over and over that it's incurable, then I get told I'm making it up and so on until I finally flip and scream that it's going to get worse and we have to adjust to it. Then I'm upset. It's so regular I don't known how to handle it and it just leaves me drained. I know it's a terrible illness , I know he's frustrated, but my life has changed too and it's hard enough without these rantings. Does anyone else have this problem ?

33 Replies

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  • I certainly did up until about a month ago when he really started going downhill quickly. He doesn't say that anymore.

    And I do believe I read that the denial issue is also a symptom of the disease.

    Very sorry for what you are going through. I know it's hard but I ended up not responding as much as possible to the rants by quietly saying every time, it is PSP and the neurologist confirmed it by the MRI. Or every one of your symptoms are symptoms of this disease.

    For the most part, I think you just have to wait till he reaches the point of realization. Now maybe someone else will have a better answer but that was my experience.

    Best wishes to you.

  • Gypsywoman George is also in denial, he says that I told the doctors that he had PSP, never heard of it until the doctor in Cyprus said he had it while we were on holiday lasy year.

    He is always blaming me. The other day I washed and put him on clean clothes, went to get him a cardigan from the cupboard, 2 feet away from him, and he said you have abandoned me, and that I don't care about him, I am always there cleaning him, dressing him, cleaning toilets and cleaning toilet floors it is so frustrating, but what can you do. They have no empathy, that is what this horrible illness does . Yvonne xxxxx

  • I also think they will never accept it, that is there way of dealing with it. Yvonne xxxx

  • And no sympathy or empathy is an early symptom or it was for us. Not caring about anything or anyone for the most part and lack of interest in family or normal hobbies. And just a lackadaisical attitude in general.

  • Whatever you are going through, it's temporary. Hang on! We are in this together. Best, ec

  • I was always having to Say WAIT !!!!!, and john would keep on and on and on . I think it's all part and parcel of th many many symptoms . he doesn't appear to do it as much now .

    he does keep worry freeing about when the carers are due or anyone for that fact and it niggles him . I try then and change the subject . in. Fact in any situation that is troublesome I think change the subject . It clears their head for a while .

  • It must be awful being in conflict like this all the time. It may be part of PSP but thankfully my husband has always accepted the illness since diagnosis. I had a job getting him to the GP when he showed symptoms as he said there was nothing wrong with him and after diagnosis he still thought he could do everything he did before but he never queried the diagnosis. What was your husband like before PSP? I ask this because C was always gentle, would steer away from argument and conflict and many have described him as a proper gentleman. If we had a problem we would discuss it. If I raised my voice he would walk away until I'd calmed down (very annoying) and if he ever raised his voice to the boys it was such a shock for them, they knew he meant business. I have never heard him criticise me and he was told by our pastor that he had the gift of encouragement as he always boosted people up rather than put them down. A couple of years ago he was crying and when I asked him why he said it was because I had to do so much for him? I've made him sound a bit saintly and of course he had his faults, one being that he was probably too nice but I have never known him to fall out with anyone. One neighbour told me once that he hated C. I asked why and he said it was because his wife now makes him hang the washing out like C does. I never asked him to but he started doing it when I was painting, doors not pictures. That was 30 years ago when many men still weren't doing women's work.

    It must be very tiring listening to constant rants and I'm sorry I don't know the answer. It may be something you have to put up with, or walk out of the room, until he gets to the stage when he no longer talks.

    Sending you a big hug and hoping you have a quiet day.

    X

  • I understand your frustration my husband after 7 years still is in denial. I can relate to your reaction and your guilt afterwards. It is so hard I had to train myself to walk away and calm down because when I reacted he seemed to look at me as if he won. Please for your own sake dont react it is very hard. Just remember its the PSP and also the persons personality before the disease. Take care of yourself xxx

  • As weird as this might sound. I wish S would rant a bit! Since his stroke 5 years ago, (sure that was part of PSP). He hasn't shown any emotion. Use to be very frustrated before that. Always having his two year old tantrums, getting to a point he would have 2/3 a day. All about nothing. My life wasn't in a good place, thought about leaving, but deep down knew something wasn't right. Two years now since diagnoses!

    I know he does get upset, he does get awkward and just doesn't do what ever task I set him. Like standing still while trying to dress him, etc. etc! S suffers from huge apathy, not really sure which is worse, apathy or the ranting. At least the ranting you can understand, not pleasant after all you do! Apathy, I just get nothing. I can shout, scream at someone, who just sits there staring out to space, or Sky News!

    I guess life sucks either way. Oh boy, was someone having fun, when they invented PSP!!!!

    Lots of love

    Heady

  • It must be frustrating and disheartening but denial is a symptom of this condition. Luckily I have not been subjected to abuse, but M being a nurse earlier may have helped, as well as getting early symptoms for over 3 yr before diagnosis so she knew something was not right. Luckily her personality change has been from assertive to passive, not much help for you, but as the condition progresses maybe being aggressive will help him keep going. take care of yourself.

  • I think nannaB is right in that the reactions are also influenced by the pre-diagnosis personality. When I complain about C, the children say, "but he always did !" What gets lost with him is a lot of the consideration for me. He was always a real gentleman but is now very self centred. He is still appreciative and loving but can't bear to accept the helplessness that accepting the diagnosis means. I cope by ignoring the rants and just saying that we need to manage what is happening. That we are both affected and have to work together. The trouble is that we can reach a rational agreement and then he forgets.

    These problems are symptoms of the disease.

    Jean

  • Hi Jean, I often wonder, when the "but he always did" is said, how much was PSP. S was ALWAYS getting himself into trouble, by saying the wrong things. Some people still hold certain comments against him. Thinking back, I am pretty certain PSP has had a huge influence in all his relationships! Especially close family, he was wanting them to take more responsibility, because inside he knew things were going wrong, therefore wouldn't be able to carry on in the role of chief provider. If only I had known, wouldn't life have been better. OK, some ears would have well and truly been bent. They still will be one day! I will remind certain people, of their lack of caring when it has been and is needed! That very sad thought, gets me through some of the dark times!!!

    Hey ho!

    Lots of love

    Heady

  • My late wife was also a little bit in denial, but not nearly as much as your husband. I tried not to argue with her as that just upset us both and I loved her too much for that. I know its very difficult just to keep quiet but if you can its probably best.

    Good luck

  • I feel your frustration! I have learned not to argue. Sometimes it makes me crazy not to say anything, but it usually ends up worse if I try to disagree. I let him say what he needs to, and sometimes I will agree with him. Usually afterwards he won't even remember what he was upset about. What I have a really hard time with is he thinks I make up things to tell him because he won't remember anything we have done. Most of the time he has no short term memory at all, and sometimes confuses dreams or what he's watched on TV with real life, and will say I've done things I really haven't. Very frustrating for me as well as for him I'm sure. I'll be glad when/if we leave this symptom behind!!

  • STOP THE ANGER. It's not his fault, it is not your fault....yes this could very well be the disorder making him rant and rave. The best thing for you to do is listen and agree that they should be coming out with a drug and that for now "lets use these, CoQ10.!" or some other vitamin. Go in another room when he is like this.....You being there may just fuel his fire! Is he able to be left alone in another room? [I broke into my own thought this is from the CoQ10 thought] It is a supplement that supposedly works on the brain. Unlike prescribed drugs, its non addictive and does not have adverse side effects (check on that statement). What you need to do for your own sanity, is find something that will satisfy him. He may do well with an antidepressant talk to your dr. about that one.....Get him interested in stuff oh have your been to curepsp.org? It has a packet you can send away that answers all kinds of psp questions. If he is still able to use the computer, tell him to go to that site for more info on what drugs and research is being used/done.

    For this very moment know this, we have all been there. My husband was not combatant but I 'knew he was doing this to me' He would go through walls break brand new items I would fix it , that was the one he would break! Guess what? I stopped fixing it...whatever it was (except the toilet...a necessity) After a while I got used to it then I started seeing it for what it really was, not something against me, but an evil disorder slowly taking my husband's abilities. Now my fight is with the disorder not my husband that whole change in thought has (believe it or not) allowed me to be somewhat happy/happier.

    Find something that relieves you for awhile from being a caregiver. Ask for help from agencies in your state or country....there are alot of agiencies out there willing to help you.....ask your friends and family even just for a respite, they most likely will be willing.

    Keep your mind body and spirit strong. You cannot do this if you are drained (as you well know) If you are a Bible reader, lean on it for strenght, pray daily, exercise (especially walking exercises for your husband) daily. Find joy and keep it!

    For now take deep healing breaths, and know you have a bunch of friends YOU can rant and rave to here.

    Stay STrong, find joy, keep it.

    AVB

    He gives power to the faint; and to them that have no might, he increases strength

    Isaiah 40:39

    Wherefore take on the whole armour of God, that you may be able to withstand in the evil day; and having done all, stand Ephesians 6:13

  • Thank you all for comments and suggestions and sympathy too , lots of helpful ideas and thoughts there too which I will try to put into place at the next episode. Today it's all forgotten , such a cruel evil disease . I thank God I found this site, it helps to have such friends . Xx

  • Yes, you have loads of friends that care about your well being! Keep ranting and raving, it all helps to release a tiny bit of frustration!

    Lots of love

    Heady

  • My husband thinks he's going to get better. He has become very self centered and any empathy has gone. Even my mother gets upset because he doesn't greet her as he used to. I know it's not him but the lessor him. I said before that to care for a psp sufferer is a bereavement, pieces die every day and don't come back. Having said all that it's not your fault. Don't feel guilty. Not only is he adjusting but you are as well and it's worse for you because you are more aware of the changes. F is at the stage of nearly in a wheelchair all the time and not able to type. It is so frustrating when decisions need to be made that he thinks he's capable of but you know he's not. Making the decisions for him is not being disloyal because he is no longer whole. You will find that gradually he will allow you more control. It's a transition. There are no easy answers except find the time for yourself to stop, cry, scream, whatever. Even if it's sneaky 10 min of deep breathing locked away somewhere. Release the tension and the guilt.

  • My husband is still in denial a year after diagnosis and over 2 years since start of symptoms, sure he knows really but just can't cope with the reality. Can't really blame him but makes talking and sharing problems very difficult. He has become very passive in most things but continues to think he can do most things. In reality he can do very few due to physical or cognitive problems. It is so sad to see a strong minded and independent nan become a shell of his former self, so so hard for both of us. I do hope that your situation soon improves and that he does begin to take it on board, makes things easier to deal with. Meanwhile rant away and try to get some 'me time' xxx

  • Well, I have to say, after my guy's diagnosis - a few years after - I am the one who is ranting and temperamental! He is calm, wise, generally sweet and funny, and slow to respond to everything. He falls, or starts to, I get a hit of adrenaline, he balks at my next instructions, lunges at something in the opposite direction or just seems to ignore me, and I lose my cool. I am the one who can't seem to adjust, but I'm working on it, because he deserves so much better than my crankiness.

    In retrospect, the apathy and loss of pleasure in things he used to like to do were beginning to appear years before his diagnosis, and he was diagnosed very quickly, once we started trying to figure things out.

    Trying all the time to force thought through the tangled pathways in your brain in order to do the simplest things must be horrifying. Knowing you are inexorably getting worse and lacking the ability to fight - awful. PSP doesn't effect all people in the same way, but the frustration and fear have to be universal for those who maintain awareness, and not all do, of course. it is a very hard row to hoe.

    After a couple of weeks of his recovering from a bad fall, we are back doing some exercises, and what a difference they make! It's so heartening to see him regain some movement.

    Anyway, I'm sorry for everyone who has to deal with an out-of-control partner - especially my guy! On we go. Love to all here, Ec

  • Unfortunately, S has the same problem as your guy! Living with a screaming, ranting wreck most of the time. We actually had a Parkingson nurse around today. She was asking a load of printed questions. One was, "do you feel that your spouse does not give you enough support?" He replied "sometimes." I was really chuffed, I thought the answer would have been, "often or always!!!"

    Glad to hear that Mr C is recovering from his recent fall!

    Lots of love

    Heady

  • thanks, Heady! Glad to know I'm not the only one. The other day, after I'd gone to work, he phoned me at the office and said, very mildly but very meaningfully, that he had to say that he was disappointed in my behavior that morning. Disappointed!?! Me, I was appalled! I had turned the air blue and then thrown his clothes down and stormed off. He never says so much as "darned." I know apologizing can't make it right, and I feel so bad and sad and ashamed of myself. I don't like myself very much a lot of the time. Counseling for me, as soon as I can get the schedule settled down around here.

  • Good luck with that! I am trying to get counselling here in UK. The hospice have one, she kept phoning, while I was out. Eventually left a telephone number, which turned out be a solicitor. Now she has given up, because I haven't got back to her! No point having a go at the hospice, I have run out of time to go and see this woman. S's contact with them is over next week. So no more Hospice. I'm devastated!

    Lots of love

    Heady

  • Oh no! You can't get hospice renewed? Here they go in 6-month increments, but I couldn't get in because the psp doesn't permit the initial 6-month prediction. I have been trying to get some home help, also frustrating as everything is geared toward defining immediate need, with no one looking down the road.

    I really feel for you asking and not getting help. That is such a miserable ordeal. Demoralizing. I'll get counseling through my employer. Did it for a while last year, but she moved, so I need a new referral. Another reason I shouldn't quit work, as I have been considering.

    At least we have this place. I can't imagine how I'd be coping without it, and you. Love, ec

  • George has also no empathy, it is all about him, if I say I am not feeling well he ignores it, I have learnt to let it go over my head, which I'd difficult.

    He also keeps saying he is going to draw plans for an extension, he can't ever write anymore, let alone do plans for an extension, he was a build surveyor, and he did many drawings for extensions, he was very good at his job, knew all the building regulations, it is sad, I brought him one of those adult colouring books, he has not even looked at it.

    Yvonne xxxxxx

  • The things S is about to do, is nobody's business. Cut the hedges - just had a gardener started and he is wishing he hadn't taken the job, because it's so big a job. Clean the overgrown ponds - that's one of the first things I had to stop him doing, as he kept falling in!!! Oh, and when he is better, he is going to climb some mountain! Shame he can't get dressed by himself, go to the loo, make himself a drink, just do one small thing for himself or me, would be so lovely. Even a "good morning" or a good night kiss, well........

    The fortune I have spent on art products! Just been out and bought the latest iPad, earphones and signed him up for the talking books for the blind. Great idea, he has used it once!!! Like every thing, does it for 5 minutes, loves it, then goes back to Sky News! What is it about that programme!

    Lots of love

    Heady

  • Oh this brought a smile to my face , SKY NEWS,, it's on in this house, all day repeating itself. When I finally mentioned it we had a respite for a day, but then I felt mean......if it is his only pleasure, so what, I'll have to bear it. But now I'll think of you in the same boat !

    All best wishes

  • Yes, my husband has delusions of , walking to town, mowing the lawn, or fixing something or other, you are right it is so sad, it's the hardest thing to deal with . I think this side is harder to deal with than the physical problems. I realise others may not feel the same. It's a long drawn out bereavement in a way . X

  • Ah bless you, it's very hard. So many of us here as you can see understand exactly where you're coming from, you are not alone my friend. My mother is in major denial after 3 years and we think she's probably had PSP for maybe coming up to 7 years. She was initially diagnosed, we then paid for a second opinion and she's since had another medical diagnosis but she still insists they don't know what they are talking about, it's a conspiracy etc etc... they are all in it together!! She always says things like "when I'm better, or when I'm walking again" and similar things, sometimes we just go along with it but when she's gone on too much, we have stated the obvious that she will never get any better. Hard to know best way to handle it sometimes. You just have to try to remind yourself that your husband doesn't mean it and it is part of the condition. Denial is a coping mechanism, it gives them hope and fighting spirit, which in a back handed way is positive. Very difficult. Truly sympathise. Best wishes x

  • Yes, these are the sort of comments I get, I can go along with it for so long then it becomes too much. Thank you for your reply , it does help to know this is all " normal" x

  • All normal sadly and remember you are only human, it is very hard being a carer and seeing a loved one deteriorate. Don't worry. Have a moan to us on here to get it off your chest. We're all in the same situation, we understand and for me, that helps a lot. Take care x

  • Yes George loves watching to news I don't think he knows about sky news, he watches the news on ever side , when you ask what was that about he does not remember. He said he could do the garden if I help him, not sure how? Yvonne xxxxx

  • I find that this denial thing means you cannot talk about the inevitable with the psp patient like its all swept under the carpet. I do not know what my partners wishes are upon his death because it cannot be spoken about. Does anyone else feel like this?

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