Kevin has told me that one of the problems with PSP is that my brain can no longer learn very easily. Also that I sometimes have difficulty understanding some of the complexity of social situations and I am more liable to see things in an oversimplified way.
Kevin sometimes has to explain what is going on between us because I don't see it anymore. He has to explain the emotional impact of my actions on him, because they don't occur to me. One of the problems is I don't 'do empathy' so very easily now. It's harder to imagine myself into the others shoes.
Sometimes he thinks I am being belligerent and stubborn... Its because my find is so much less flexible.
Just as PSP people loose fine motor skills in their hands they loose the 'fine motor skills' in their brains perception of things too.
When Kevin explains these things to me I have trouble seeing it this way.
All i can say is tell him that you love him as often as you can. I think that is what gets me through all the pain and upset. Brian still says hello my best girl and he tells me several times a day that he loves me. Even now after a funny five minutes of refusing to get up (because i wouldn't take him to the pub) he is now sitting in his chair waiting for dinner.... saying you are good to me....... and i loves you. Janexx
My dad has no empathy and admittedly I find this very hard to deal with however because I now understand that my dad is very very ill and equally near the end of life I try very hard to not get annoyed!
This morning I asked dad how he was, and he said why do you keep asking me stupid questions, your so stupid! I just agreed that I am stupid, some time ago this would have upset me but no longer! I cannot imagine how it is to actually have Psp! I have total sympathy and utter respect for anyone that has this dreadful illness!
I know that it becomes harder for you to understand things too, and that must be very hard for you to understand and accept!
All I know is, as carers, husbands, wives, daughters, sons we all do our absolute utmost to make our loved ones feel safe, keep as comfortable as possible and show our love and affection. Just because you have Psp it doesn't mean your not you and we all must remember that!
Everything about Psp is frustrating, shitty, unfair, wrong, tiring and deeply saddening and heartbreaking!
I must say I am having a bit of a difficult time. I want to know your perspective not Kevins perspective to or for you. This may be difficult for you but is it impossible. I know my perspective; I know Kevin's perspective. In fact., Think about what Kevin has told you, Do you agree? Can you step outside his perception? Can you define your behavior more objectively or at least without his influence ? Lets say a balloon comes into view. It's aqua marine in color. I perceive it more as green but someone says no it's blue. I go to describe it and call it blue.....was that my perception or influenced by someone elses.....
LIZAB, I want to know how you feel, your perception of your behavior/actions? Even if it makes no sense to the nonPSPers....If you are asking for someone elses take on something, you may still have your own take on it.....that's what I want!
AVB
Adding- No disrespect or offenses were meant here just good old objectivity
We've just re-read the post - yes, it does sound like it was mainly Kevin
Here are the bits which were my ideas in answer to his:
" I sometimes have difficulty understanding some of the complexity of social situations and I am more liable to see things in an oversimplified way."
" He has to explain the emotional impact of my actions on him, because they don't occur to me."
"One of the problems is I don't 'do empathy' so very easily now. It's harder to imagine myself into the others shoes." Its about holding the whole picture of what's going on.
"Sometimes he thinks I am being belligerent and stubborn..." It's because I can't always understand why we need to do things differently."
I worked professionally with children who had autism.
And Kevin was a clinical practitioner in Adult Mental Health for most of his life... He might just have spotted it
Hi AVB
I understand. No offence taken.
The last post had to have Kevin's views because the issue is what I do and don't understand.
We tried to make it clear who's parts were whose.
What we do is talk about a subject. I try to explain bits and Kevin expands them in different ways until he gets something I agree with. Our rule is that he doesn't post anything with which I disagree.
I do my best to get my experiences over, but I need his help. So its not perfect.
One thing that makes it harder for me to understand social things is that I can't see peoples eyes and faces properly. So I miss cues. As a retired social worker I used to be a very skilled communicator and had boundless empathy.
Thank you for allowing me to ask such questions....I am so totally curious. I do understand that lack of empathy is something about PSP. I just want to know what it feels like....you know like trying to describe your dream. We understand dreams and maybe they can be explained....but what is the experience! And if that was your experience than thank you thank you for sharing....I wish B would describe his experience....
Again I do appreciate you letting me dig in.....It's good to be able to ask questions..I wish that B and I could talk like you and your husband do.....
Do you have some visual acuity? Is it just your downward gaze that is in decline or like Bruce says, he cannot focus but sees more peripherally!
I think this is a wonderful and valuable post, and I can't tell you how rare and impressive it is that you together can articulate so well what you are experiencing. Heck, couples without psp rarely communicate together so well! I just read it to my sweetheart. Some if it applies to him, but not all. I think the analogy of the loss of fine motor skills is apt, and illuminating. He still has a pretty good perception of the emotional lives around him, and is often moved to tears by a touching story on the radio, or on this site, but it's also true he can be terribly stubborn, and sometimes it's clear that he chooses it, because he has so little control over his life otherwise, and sometimes, as you say, it's because he just can't see why we need to do it my way. And he rarely seems to see how hard it is on me physically to care for him. He does tell me he loves me everyday, and that makes all the difference.
Liz and Kevin, you are a unique asset to this community, separately and together. Thanks, as ever, for your thoughtful and insightful posts. Love, ec
Hi ec
Thank you for the encouraging comments and your 'contribution'.
Writing these posts together makes us talk about these difficult things. This last post made me face the fact that my brain is not what it used to be. It made Kevin understand that my laughing when he is struggling to do caring is nervousness and uncontrollable because of PSP. Not wilful sabotage. It was painful for both of us, but oh, so worthwhile.
Thinking of S. I still feel a lot emotionally and I love Kevin to bits... Just sometimes that doesn't come over when we are trying to make things work. From what you are saying about S, it sounds similar.
Caring and being cared for is not easy either way around and my heart goes out to you both.
You, the others here and this forum have changed our lives completely.
Your post has opened a channel of communication for my guy and me. He can't talk much at all any more, but he was very moved by your description of your perceptions and how you and Kevin work out what to say. It was VERY good for us today. Thanks with all my heart. Love, ec
SMy brain still works, that Is my problem Life wouldbe so much easier if it didn't . Now when I'm awake in the middle of the night I get my Nintendo and do brain training 2. I get all the answers right but my right hand is not quick enough to write them down. I can't read because my eyes won't focus properly. Half of me wants a speedy end, the other half thinks there might be a cure so to hang on in there.
Hello Liz, it is so very interesting reading your posts, thank you. I was particularly interested in the post mentioning your " uncontrollable laughing". I dread getting my psp suffering husband to bed , that is the worst time for me as he laughs hysterically at my struggles. Sometimes he chokes from laughing , twice seriously it has nearly been a 999 call. I try hard to ignore it but I find it the most difficult part of the caring and it drives me to despair. Not met anybody else on this site who has mentioned this problem. Look forward to more posts from you.
Hey gypsywoman. Haven't heard from you lately. Sorry to hear you are having so much trouble. Getting to bed is bad for us, too, most nights. By then I'm tired and achy, and not as patient as I should be. Other folks have mentioned the laughter. I'd like to have that a time or two, though probably not all the time. It's just that the crying breaks my heart.
Oh, please don't mind too much for us, the crying is not really so very terrible, and generally passes as quickly as it arises. It does show that he in in there, and that he has a soft heart still. The thing is he likes to laugh and enjoys a joke, and I'm just not that good at finding the funny things. I need to work on that! Reading your reply below, I can say that like you he has developed a happily childish cast to his sense of humor, which was always a good and rather delightfully dry one. It's really fun when I hit it right, as when I told him recently that I was treating a cut on his little piggy (toe) with oinkment. He thought that was hilarious and he laughed and laughed, and kept saying "oinkment" and going off again. For days I could get him to laugh by saying "oinkment." We both enjoyed that!
"I was treating a cut on his little piggy (toe) with oinkment."
Made me laugh too!
Good on you for making him laugh.
I got Kevin up at 0400 this morning to tell him the water feature sounded different. But I could not speak for laughing - he had no trousers on. After three tries he went back to bed. He wasn't laughing
I don't know if my laughter is the same, but for what it's worth:
For a long time I thought it was nervousness, but latterly I think it is part of the PSP. I seem to have a sense of humour now which is not my own. It's more childlike. So if Kevin is talking about intimate personal care things I find it funny. I drove him crazy by laughing if he came into my room without trousers on. I thought it was funny.
If Kevin get's uptight I laugh more, that might be anxiety.
If he is moving me and I get frightened of being out of control or of falling I laugh too.
No matter how much he begs me to stop I can't - It's uncontrollable.
What does help is if he asks me to relax and calm down. I laugh less if he is more relaxed, speaks softly and does things slowly.
Maybe he should try hypnotism! He once used light hypnosis on me in the dentists chair. It worked.
Hello Liz, thank you for replying , it is very helpful. I am sure from your description it is part of PSP. In the beginning I thought it was nervousness but I don't have that opinion now. It would seem the laughter occurs in similar situations, such as moving and intimate care things and certainly the more exasperated I am the more the laughter is hysterical and uncontrollable. I once broke down with the frustration and cried and he lay in bed and cackled relentlessly. You are a marvel to be able to put into words the feelings, my husband can't explain how his feelings are on it. I will try and not stress up and get him to relax to see if we can ease it because at present I dread bed time prep , the worst time for it. Bless you both for your input.xx
Hi Gypsywoman, lovely to hear from you! S can use this horrible laugh as well, especially if I am upset. Feels like it's a punch in the stomach. I know he doesn't mean it, but that doesn't stop the pain, or me getting even more angry!
Bed time is the worst time to be a Carer, we are all very tired, stressed and let's face it, had enough! I have Carers come in now to take over from me. Not working at the moment, but still early days, it's a different company, from our morning help, jury is definitely still out.
I am getting to the stage of thinking of carers help at night , but I have heard timing is so unreliable and what do I do while they are putting him to bed??? I visualise sitting watching tv thinking of how much it's costing me and feeling lazy.! X
Do you not qualify for CHC yet? I would love to sit and watch the TV, feeling lazy, whilst someone puts S to bed, but I have to be the extra helper, so end up doing most of it. That hopefully will stop this week, have got the same girl for the next few days.
Most care staff don't want you around, I got told off by one the other day. She said I had to sit down and not be involved with S, that's why she was there! Remember, we have to do the caring for the rest of the time, so half an hour rest, is our tea break!!!
No , not eligible for CHC yet , he goes to hospice one day a week and I get 3 hours free sitting service so I make the most of that. I think there's a lot worse to come yet so I plod on managing. Xx
Yes there is, so make sure YOU are in a fit state to cope! Plodding along is great, until there is a crisis, then you are stuffed, no extra petrol in the tank, for emergencies!
I'll have to go back and look it up, but someone here told the story recently of being in the pub with her husband who started laughing for no good reason, but he was pretty loud, and pretty soon over the usual pub din she could hear people catching the contagion and laughing along, until the whole place was rocking with laughter no one could explain!
(If the person whose story I just hijacked would care to own it and tell it properly, I'd be glad!)
Yes I agree with you , as frustrating as the laughing is I know the crying would be unbearable. Terrible illness isn't it with frequent new problems to cope with. X
Thanks Liz, I'm sure if my husband was on this site he would agree with you, but as the carer I feel like he goes out of his way to make things difficult for me!
Thank you and Kevin for your posts that help my try to see things through my husbands mind, I've tried asking him, but him trying to explain to me isn't going to happen, he just says he feels dizzy and can't see properly!
Dear Liz and Kevin thank you so much for your really valuable post. I find the lack of empathy from my husband who was previously a caring and compassionate surgeon sooooo frustrating. Your post is a gentle reminder to me that he is not choosing to behave in this way. Your insight and contributions are really appreciated and helpful. Though i do understand it must be very painful for the two of you coming from caring backgrounds to deal with the personality changes thank you both for sharing. Clearly you still have the caring roles you had previously just in a different way.
Hi Liz I wish my husband had been able to vocalize how he felt with this awful cruel condition. Thank you for your point of view . Thinking of you and Kevin
My husband Charles (a nurse for 30 years) says he doesn't cognate well. He says he tries to piece things together but it is very slow. Plus, alot of noise, etc. makes it more difficult. He needs one on one stimulation.
The Go-Talk machine is proving to be a help when he doesn't just play with it.
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