Just sharing this in case it sheds some light for others, or if another has the same experience.
I was talking with Kevin today about risk.
I told him that I sometimes want to spill my coffee on the bed, or do the opposite of he or anyone expects or hopes for.
Rebel!
I want control of my life back. I want to decide what I want. I want to do things and do them the way I like.
Kevin doesn't want me to use the word 'power' here... But that is what I want in my life. (argument with typist - Kevin - ensues... with chuckles).
I want power back! - I won.
I feel compelled to do these disruptive things. Up until now I have not done them. We cannot work out if these thoughts are being driven by frustration or whether they are just part of having a PSP brain.
I don't want to make things hard for Kevin, but the thoughts just keep coming from time to time, every day.
Interesting.....Does this happen frequently? Because I swear B was doing this stuff on purpose....The bathroom toilet Granted it's a target due to need of being at the target....but I would replace, and within a week he would go through it again.... or I would move furniture to keep them safe and damn if he wouldn't find and fall and break! Windows....
Again, some of the more stable targets, ie walls window toilets...are easy....but things that I can't even explain...Really Bruce....?Are you sure it wasn't a choice?
AVB
Thank you for continuing reporting your thoughts...You need to write a book , "From the Inside Out"
Oh Liz I'm sorry. I know you don't want this horrid disease and I know Kevin wants to do the best for you. It's like the bratty little child who tries to manipulate you against each other in order to get his way!
Be strong, get some space between you, take a breather. You both are reasonable people and will work through it. And remember who the enemy is here, PSP!
My mum used to constantly take things out of their packaging for no reason. Tissues sweets anything she could get her hands on. It used to drive dad mad but she wouldn't stop doing it. She tries to take her clothes off at inappropriate times now. I love your posts Liz keep them coming X
Yes! I can remember a few years back, asking my husband why he had done something dangerous ( can't remember what, there were so many incidents) and his response was, "Because I can".
Oh I sometimes think my husband goes out of his way to make things difficult for me, I frequently rant 'why can't you help me to help you' maybe you've solved that , or was you a rebellious child? !?!
Thank you for your posts, both of you, and thank you liz for being frank about how you feel
Funny, I will ask my husband to do something a certain way, and he will do the EXACT opposite, weather it's harder or not as safe, doesn't make any difference. So I've gotten to the point where I let him do something how he wants, and stand by to "catch" anything that goes awry. But Liz, i think you're right, the need to do things and take control are very strong, and I can't blame either one of you!! Just try and be safe while your taking control! : )
Dear Liz you have put into words the actions of a person living with psp.
I don't think it's really a power thing it's a case of being able to control something. And i often think i will be a horrible person when i need someone to look after me (i have been a carer for to many years).
I would often think Brian was horrible or stubborn but it was more likely it was a way of taking some control.
Because lets face it once someone is reliant on someone else for things like it is feed time or drink time or getting up and going to bed you have lost control of your own life. So like Brian clamping his mouth shut when I'm trying to feed him or give him a drink he is taking control of something that he can and not really being an awkward baalamb.
Hi Liz, You can't fool us, you are a total rebel!!!
I do understand though. S was a man that thrived on Power, being in control of every aspect of life. Always pushing it to the limit and coming off the winner.
I'm afraid he wasn't expecting the challange of PSP. This is one war even he hasn't been able to find the tiniest bit of control. He hates being under the control of others, especially me! I suppose this is where the clashes come in, I do (sometimes) actually enjoy being in charge, having the roles reversed, him having to rely on me. At the beginning, it was hard not to take that a bit too far. I have witnessed people getting bullied, because this has happened. My step father did it with my mother, when she started developing Alhzlmers, so have been aware, that I mustn't do this. I think I have achieved this, well no doubt I have been guilty at times!
The secret I guess, is finding out when you can and can not take control. I try to give S control, but he only wants it, at times that are impossible for me. With these wonderful insights you are giving us, I hope you and Kevin can work out between you, when you are allowed to throw coffee over the bed and when is probably best to go with the flow!
Taking the power struggle out of the equation, as Carers, we don't want or need to be in charge, but we do have to be in control. PSP throws too many curve balls our way, without that control, you and all our loved ones, would not be looked after the way you want and we demand! Our standards are very high and we do need that bit of power to achieve it for you!
I do hope that has come across the way I intended.
My husband gets hugely frustrated by the loss of control PSP has brought into his life. We have talked about this frustration and subsequent angry outbursts with the counsellor at the Hospice and have agreed sone areas of acceptable risk for now. An example being getting into the car. I used put my hand on top of his head and we have agreed I will no longer do this as he finds it belittling. I find it really hard to watch him hit his head every other time he gets in the car but I do accept it is his choice. My husband feels as though he has reclaimed a little independence and has fewer angressive episodes. Hard to watch someone you love struggke & potentially hurt themselves but trying very hard to support choice.
Good point Liz! This is why I try to let B take care of bathroom needs...except sitting down on toilet seat....thats a two man job....but when we started going back to the gym (I was sicker than a big dog for a month) A boy working on his sport safety degree volunteered to help B . so I had B lay down on the mat and with the help of the volunteer, find a way to get up...After about 4 days of this activity; B, as clear as a bell said "No more mats" and a wash of guilt ; embarrassment , pain that I was making him do something he did not want to do and in a public eye!....I felt so bad and we've never done them again...Like Heady said, taking the power out of control allows for everyone to still have honor and respect...
This is something Chris and I have discussed a lot. He admits to being "difficult" at times " because I can ". It drives me mad and makes more work for me.
Its PSP but Chris was always a rebel, enjoyed being pro-active, being devil's advocate, bit of a loose cannon. All that has been taken from him. I think at times me being enraged makes him feel still alive in a funny sort of way. At least he is not a vegetable. He is sweet and charming with everyone else !!!
You are right, S can't make me laugh, feel loved, safe, happy, you name, it only thing he can do, to show me he is still there, is to upset me and make me angry. Never thought of it in that way before. So if that's the case, I CAN shout and scream all the time, because, that what HE made me do. I am making him feel alive!
Had me worried for a split second, thought I might have to start behaving!!!
I remember when my dad was old. He was frail but mentally alert. We had always had real ding-dongs, not abusive but heated. [ exactly as Chris and I were !]. I stopped disagreeing with dad until it struck me that I was patronising in thinking he couldn't handle disagreement suddenly. So I went back to challenging him. He came to life !
Chris can't respond but I think its the same inside. So, if I'm all sweet and soft to him it doesn't really feel "us ". We were always discussing and challenging. He doesn't get that anywhere. Only second hand through me.
The trouble is it was always about the world and ideas, now I feel really angry about his bowels !! It stresses me. No fun there.
Perhaps I should have a row with him about Brexit with me being both sides ! Only problem is we're on the same side. I'll have to think it out again.
Well put Liz, good for us carers to hear things from your perspective and make us stop and think what it feels like to loose control over your life. I feel the burden of having to do everything for Ben and he must equally feels the frustration of having everything done for him. Bet he is sick to the back teeth of me telling him this that and the other, no wonder he seems to switch off poor man! I can sometimes almost see the speech bubble appearing from his head saying "give it a rest Kate, you are driving me mad"
Liz, Thank you, thank you, thank you! You have given me the greatest gift. I thought I was going to lose my mind over the conflicts my sister and I have had. A short while ago, she admitted that she liked to make me mad and that's why she does the things she does; to take scary risks and laughing in my face to name a few. She also intimated that she can't help it. This has been so foreign to my way of thinking, I have been beside myself thinking she didn't care if I helped her or not. Through our strange conversations, I realized I was "hovering" over her to keep her from falling, but she wanted to have some sort of independence. She felt she was losing control of what she could do. So, I backed off and I went on vacation to regroup my thoughts. Both of us are doing much better. But, it has been extremely difficult communicating with her. Her mind doesn't think in linear thoughts anymore and I have a difficult time understanding where she is coming from. However, your post has helped me tremendously to understand better on what she is thinking and feeling. So, Thank you again! You have helped me to hang on a little longer. Bless you and many (((((Hugs)))))).
I love sharing ideas. A friend sent me some ((((Hugs))))) when I needed them and I loved the symbolism. So, I now "share" her hugs with others. We can never have too many hugs! At least I can't. I've discovered I'm very greedy about hugs and kisses. Lol!
After reading all these posts on hugs, thought I would share this. My 3 year old grandson gives me 'huggies' out of the blue. When I told my daughter this, she said he does this when either he is about to do something naughty or has already done so. My ego was somewhat deflated. Kids they are sooo cute. Nanny857
That's. really nice - Its set me up with a big smile too.
Liz
xx
Dear Liz,
I just read all these posts and I am so gtateful. It is as if the lights went on and I can see things more clearly. I have spent so much time trying to get Joe to do what I consider so simple to make our lives more peaceful but I now see it is all about that cursed male/ female control thing.
I have to make him understand what I need in order for us to move forward and help each other the way we always did for the past 55 years.
Please help me Liz. How would you want to hear what I want to tell Joe. What words should I use??
Thank you for anything you can offer.
You are a blessing to us all....
Big hugs,
Rita
• in reply to
Hi Rita
Thank you. It's good to know when I have been able to help a little.
I don't have the answers. I can only say what it is for me. Kevin, my husband and I struggle so much some days. These posts are what we think is hapenning for us.
If it was me I would like it said when we were quiet and together, with warmth, and understanding. Not as part of a row. Also when I can occupy myself afterwards with something I can do unaided.
Kevin and I were in the middle of drafting another post which hopefully add to the picture.
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A plea to the PSP Assoc for an improved forum. 
Love and relating from a fading brain.
My grandad <3 died at the hands of psp 11.4.13
