Why so different with other people?

I apologise firstly for not joining in conversations on here. To be honest, I've gone into hibernation these past 5 months. I'm just not handling psp well.

I would like to ask, Do any of you find that your wife/ husband / family member with psp acts differently for other people?

Family and friends keep telling me how well my husband looks. And he really does look well infront of other people. Happy, smiley and colour in his cheeks. Why then at home does he look depressed, grey, is very short fused and moody and (yesterday) verbally abusive , telling me to F off!!! I just dont get it. At home you can see his slightly masked face, You can see in his face how he is in pain with wrists and legs. You can see the fatigue. He has started to become slower with his eating. But yesterday infront of family he was like a new man, even eating normally with no coughing.. then as soon as family left he went back to his usual psp self. Is it because he is putting on a front for other people?

He is all over his family but disinterested in me. He lacks care and concern for me but not for them . I find it so upsetting ..

Many thanks x

30 Replies

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  • Dad always seemed to be able to perform tasks better in front of doctors etc. I have a theory that it is a mixture of a) that the patient loses all empathy and is completely absorbed by their illness feeling depressed and the mental toll it is taking and b) that when they are in the company of others the adrenaline kicks in and enables them to function for short periods much better than when alone with you and feeling in a more relaxed and familiar environment. JR61 x

  • Thank you JR61. This makes complete sense. This has really helped me .

  • I saw this all the time and have thought a lot about it. I tried to use it, insisting on PT appointments after we had learned what to do, because my sweetheart would exert himself for the therapists the way he eventually ceased to do for me. His evenings were better when we had company. I'm sorry I didn't do more of that.

    Have you read any of Oliver Sack's writings on personality and brain damage? Among the more interesting stories he told are those in which a patient suddenly decides, with unshakable certainty, that his or her loved one is an alien or an impostor, essentially because brain damage, while not affecting the intellect, has destroyed the ability to process the complex subconscious emotional response we all have to our nearest relations. No amount of reasoning or visual evidence can overcome the loss of that emotional effect. The patient often recognizes and responds appropriately to the loved one's voice on the phone, but will totally reject the loved one in person, because it's the feeling we have in our loved one's presence that directs our behavior, not our thinking brain.

    The thing I take from this is that we respond on many levels to our closest family and friends - intellectually, emotionally and largely subconsciously - but with relative strangers our reactions are more simple and superficial, more consciously manageable and self-directed. You might say that we relax into our worse selves with our loved ones, but that doesn't allow for how much simple energy it takes to be sociable outside that relationship.

    Bottom line, it's the disease, and not in your spouse's control. All I can offer by way of consolation, though, is that this will eventually pass.

    Hang on. Love and peace, Sarah

  • Thank you Sarah. I haven't read Oliver Sacks writings. Very interesting. I shall look him up. Thank you.

  • Really good advice makes sense. Thanks God Bless

  • Oh, for a pound/dollar, into the PSP research fund, every time this comment has come up!!!

    Of course it upsetting for you, by oh, so, normal. Take it as a compliment, you are allowing him to relax, feel totally safe. There is no adrenaline flowing, so he is not in the flight mode, which different circumstances produce. We have all had it, including the swearing and yes, been equally as hurt as you. I repeat, you make him feel safe, be proud of yourself.

    Sending big hug and much love

    Lots of love

    Anne

  • well put, Anne!

  • Thank you Anne. Such a good point and I needed to hear it. Thank you

  • My pleasure.

  • Hi Karibu !

    I can definitely second what jR61 and Sarah have reported to you and I certainly couldn't articulate it any better so I won't even try ! It is all true and one of the more difficult effects of PSP to deal with because being abused by the people we're caring so much about and for, just adds an extra layer of misery to the emotional drain of being a caregiver. Though these kinds of negative personality/behavior changes can occur with any number of brain related conditions, ( thinking of Alzheimer's for example ) , it's small consolation when we're being treated badly ! But obviously we know why the behavior is happening. In my situation it's my sister who has been dealing with PSP for approx. 7 years . She is very aware that her quality of life ( esp.in her opinion anyway ) has been irreparably affected. She is strong willed and as independent as she can be, but when I think about it, would I not unleash my rage and frustration on the people closest to me if was held captive by any illness that robbed me of so much ? I just might ! And PSP affectst brains so that there is not necessarily even a conscious choice possible ! It certainly doesn't make the mantle of carer any easier, but knowing the cause helps me to maintain the compassion. If behavior becomes physically aggressive , then other neasures need to be implemented. With my sister, the turnaround from nasty to nice is always a welcome relief to me, since A. seems to just move on as if her emotional eruption never happened. I think that being a nurse is helpful for me, but as with any caring person , it affects me. My empathy for my sister and my sorrow for what PSP is causing her to suffer far outweighs the hurt caused by behaviors that she can't control. So I guess what I'm communicating here is that we all understand what you're going through and wish only the best for our loved ones and that this whole process is REALLY " difficult " ( insert more descriptive language here !! )

    Sending you love and stamina !

    Elise

  • Thank you Elise. So brilliantly explained. Thank you.

  • This makes perfect sense

  • The saying goes you always hurt the nearest and dearest. Yes it is hurtful ... my hubby past that stage and cannt talk now ... but I would willingly take some abuse just to hear his voice once more. Jx

  • Me too!!!!!

  • Thank you for your reply Zeberdee. You have really made me think differently. I am very sorry your husband can no longer talk. You have all helped me to look at this from a different perspective. Xx

  • It's all so hard. Sending hugs.

  • Hi Karibu,

    I posted the exact same question when I first joined this amazing group. We all have had similar experiences. I would spend so much precious time being angry with my husband and honestly even now I go back and forth with emotions. I'm just starting to reach out for help. The explanations posted have helped me and I hope it helps you too. Two years ago at a very special day, my son'swedding, he was nasty and disrespectful to me. List goes on. Now just listless and apathetic. We hold each other up on this site and that's all anyone can do with a diagnosis of PSP. Sending hugs your way.

    Joan

  • Although I believe my husband is appreciative of all I do for him, he may at times be resentful, and I do not blame him. Everything he loves has been taken from him. I get irritated because I cannot leave the house, he cannot even leave a room without depending on someone else. I’m sure he thought we would be doing things together, and now he is totally dependent, especially since he has a hard time telling us what he wants .

    I know the changes in the brain have changed their emotions and they are often not in control of their actions. Unfortunately, as much as we know and understand, bad treatment from someone you work hard to care for, can be very hurtful.

    I pray the coming days are better for you,

  • Yes. In my case I recognize that situation and that attitude.

    In the course of caregivers we were told that a friendly, loving and pleasant attitude was frequent with people who do NOT live with the patient along and with a selfish, sad, rebellious attitude, frequent complaint and even rejection towards the closest caregivers.

    We have noticed that on the eve of a relatively important event: travel, food with friends out of home, absence of the main caregiver, etc. she is more nervous by continually rejecting food, cares, routines.

    We really do not know how to deal with those situations that are wearing and embittering caregivers except by applying patience and maximum control.

  • Happens all the time for me!! Husband recently stayed with brother who accused me of making him into an invalid apparently hubby can walk with brother further than st home and be much more independent!in ‘every way’ Back home no amount of cajoling/ bribing/ commanding will he do it for me!!!’

    I get the aggression, depression and husband who can do little for himself it is quite incredible. If anyone has the solution they should get a novel prize!!

    Sending love and hugs

    Tippy

  • Oh dear. That's awful.

  • Amen. I just got a mouthful just now and a scratch on the arm. Two hours ago I received a kiss and a warm embrace. It's killing me.

    Cuttercat

  • Seriously, it's killing me too..never thought I could dump a commode and deal with poop problems. I made it work by wearing a paper mask, put a dab of essential oil of my favorite scent on the tip of the mask and gloves and went down to business. I even fell out of bed the other night trying to turn on the light for him so he could pee. Omg it hurt so bad; how in God's name have our loved ones fallen so many times and just shrugged it off. I hate you PSP and I hate that it's changed our lives. Enough of my ranting...thanks and goodnight.

  • Yes after crying my eyes out I'm going to bed too.

  • Praying for you . Sending you a hug and some love you are doing a good job. One day at a time sweet lady.

  • As for a solution, how about a longer stay with the brother? You get a rest, your husband gets more exercise and your brother-in-law gets a clue!

  • Yes🤣🤣🤣🤣🤣🤣

  • My husban does the same thing. Go figure!!!! It does hurt .when he gets ugly with me. But nice to others. I know he loves me. One day at a time.lets hang in there!

  • Yes, we have exactly the same situation although the behaviours are different.

  • Thank you all so much for your advice. I have to accept he can't help it. It isn't his fault. It's the psp. Hard but true!.

    Sending my love to you all xxx

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