I'm sooooo upset and depressed about what transpired between my sister and I this pst Saturday.
It was a stressful week to begin with due to other life circumstances and after cooking dinner and doing dishes, all I wanted to do was sit for 15 minutes before I helped my sister with her shower. She's become somewhat obsessive about having her shower at the same time everyday. So, since kitchen cleanup took longer than expected, I asked if we could wait 15 minutes to rest my feet. She saidit would be fine. Not less than 5 minutes later, she asked me if I had locked the car, I said no. She told me to go lock the car, I replied no, that I would do it after her bath, when I took the dogout. She got louder and told me again. Being that I was so tired I didn't give in and I told her no, I would do it later. She preceeded to use her lift chair to get up and head for the garage door. I intercepted her and told her to go sit back down. She said if I didn't do it, she would. I told ifshe went out she would fall and possibly hurt herself. At that time, she attacked me and grabbed the back of my upper right arm and proceeded to use a vise gripand kept squeezing that I screamed in pain and had to hit her in the arm to get her to let go. I'm horrified at my reaction, but from there it got worse. She kept clawing at me an d scratched me on the arm, then I'm trying to hold her off of me by holding her wrists. By this time, I'm screaming for my 100 year old father to help me. If it wasn't so horrible, I'd be laughing at the thought. I eventually had to shove her and she landed on the floor. At this time I ran and got my dad to help me. We made her promise not to attack me and we would help her up. We got her up andback in her chair. I had tocall my caregiver to come give her a shower, because I was afraid she'd attack again. After L left and she was back in her chair, I sat in mine, she calmly asked aren't I glad I signed up for this. I dissolved into laughter and tears and couldn't stop. Finally, I regained my composure and stated no one Signs up for caring for someone with PSP. That I was her sister and loved her with all my heart, that I would do anything for her. It's not something you sign up for. It just is, what it is. Still today, she acts as if nothing happened, not a peep. I'm afraid to ask if she remembers what happened or why she did that. I just don't know.
I'm sorry for such a long story, but there didn't seem to be any shortcuts to take. Has anyone experienced such violent behavior?
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Gracie_Girl
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Oh my god. How distressing and frightening. Maybe your sister can't remember as they lose so much as this horridness progresses or maybe she is embarrassed by what happened and hopes if she doesn't say anything then you won't either. I'm sure someone on this site will have experienced this and can advise you. Sadly it's not me. Take care of yourself. Marie
My husband never had violent behavior but he did have perseverations. I had to park the car in the right spot.....there was no right spot but it did not matter to him....At church I had to turn heater off air conditioning on humidifier ..etc and I can't remember all of them but they are like an ocd behavior....He is now over that type of behavior.....When he sees me upset the best he can do is laugh at my behavior......So I ask him to please stop as it hurts my feelings even more....I think he tries....but I don''t know if he can....I don't know that what your sister and my husband have are the same, but I do know that he is cognizant of his actions and his perseverations went away...for the most part....you might ask a psychiatrist for some help or maybe even just your gp....at any rate I am not laughing a. I am sorry you and your household have to endure something that if your sister had more of a choice over, would not behave this way.....
Sounds horrendous and I've not had to deal with any abusive behaviour, but never say never. I have noticed Ben has become a bit OCD in certain ways i.e. Always wrapping and tying the apron he wears when eating and asking about the car being locked, hope its not a sign that he will get so obsessive that he demands things be done 'now' it must feel terrible that your sister seems to have no memory or remorse for her actions but it does seem to be the way with PSP. Fingers crossed she soon passes through this stage as it must be so scary.
Oh dear how distressing and horrible for you. This is such a difficult part of the disease and horrible to cope with. My husband does something very similar but it is really tough when you have just sat down for a quick break. It drives me mad too. It is part of the short term memory problem that means he has to ask the same question over and over again and can't rest until you have done whatever he asked - even if you had already done it if that makes sense! Is the arm grabbing alien limb syndrome? If so your sister will find difficulty controlling it. It really hurts whatever it is. My husband doesn't usually remember the incidents later although they leave me very shaken at the time. I do hope everything is better now x
Poor you. It is awful but there have been others on this site with similar issues. I expect they will respond. Our neurologist always asks if he is abusive or violent so it must be a common thing.
My husband is verbally awkward and says things like he is happy about hurting my feelings. I leave him and a few minutes later he often apologises and says he finds himself saying things that are the opposite to his wishes.
It is so different to how he was and hard for us both.
My husband also very quickly forgets and doesn't worry as long as I smile at him he is ok.
Sorry about your experience behavioural changes can happen with PSP. My wife, luckily for me, became more passive and though slight OCD on time and positioning of things nothing over the top. Her grip and bite though have grown in strength and unintentional grab from which I bear the scars. She never knew when she did it but would look guilty afterwards.
Unlike you I am much bigger than M and have the strength to counter her action. I can only suggest that you need to discuss this with your GP, there are some meds that can help with OCD and outbursts.
Sorry I haven't. S has acute apathy, doesn't give a damn about anything! How you cope, I really don't know. Sounds though, as if you managed it reasonable well. Because I haven't experienced this, my thoughts are only that, thoughts. You would not accept this type of behaviour before, so why now? If your sister had attacked you before, you would probably reacted the same way has you did this time. I agree, you needed to put her somewhere safe until you could get help. Where safer is there, apart from the floor? OK, you might not be proud of how you got her there, but I'm afraid there comes a time when you have to do whatever you can, to make a situation safe. I repeat WHATEVER!!!
The only thing I would say is, a Carers life is not easy and is extremely tiring. I do everything I need to do for S, before I tackle anything else. If I run out of steam, which is most days, it's the "everything else" that has to wait! I accept I might have to rinse a plate to serve dinner, 'cause they are all dirty. That's not the end of the world. (It just feels like it!!!)
I agree with others, you must get your sister to a doctor ASAP, medication should be able to help some of these symptoms.
Gracie-girl, I know you feel desparate about what has happened, please don't! It's this blasted disease you were fighting, not your sister. This isn't the first time someone has written similar, unfortunately it won't be the last time. I know that doesn't make it any easier, but I hope you can accept that and give yourself a break.
Go and see the doctor, but as far as talking to your sister, unless she mentions it, I would forget all about it, as far as you can!
I'm so sorry this happened to you. Yes, my husband also does things like this. Not quite as violent, but he has hit me before and afterwards has no memory of it all. I have learned that if i talk very quietly and calmly that helps a great deal. I can never tell what will set him off, other than he will get out of his chair like he's on a mission and he'll have a far away look in his eyes. If I stop him he becomes very angry. So what seems to work the best for me so far, is to just follow him quietly and make sure he doesn't get hurt. He will eventually sit back down and kind of be "out of it" for a bit, then have no memory what so ever of what happened. It is pretty scary. I used to tell him what happened, but that either upset him or he told me I was making things up. So I decided it wasn't important to share what happened any more. I'm hoping that this is a one time thing with your sister, but probably not. Just try to remain calm, and depending on what she's doing, follow and keep her safe. It is very sad and distressing for you I know, but just try and remember that it's the disease and not your sister that is making her behave this way.
Oh, Gracie, I'm sorry you are having such a terrible time. Please don't feel guilty. I've had some similar experiences, although not quite so bad. My guy's grip has gotten incredibly strong, while I am developing weaknesses I never had before; the arthritis in my hands is often quite painful, and my shoulders are damaged. It's a bad combination. One time recently, I became really hysterical and chopped very hard at his arm, as hard as I could, with my free hand when he had the other in a crushing grip. He wouldn't consciously hurt me for the world, but he doesn't seem to be able to control his hands all the time. I'm sure my screaming made him shut down and made it harder for him to let go. I felt very ashamed of my panicked response. He doesn't seem to remember much about any of it.
So - I am lately trying to practice the old martial arts and self-defense strategy of using the opponent's momentum to gain control. On Sunday he wouldn't stop trying to walk while I was trying to do chores, and I was pleading with him to sit back in his wheelchair, getting more and more impatient, and he just wouldn't respond to me at all, just kept trying to go, in a room filled with sharp corners, where he has hurt himself falling before. So I got in front of him as I do, as if we are dancing, and helped him to walk around to the front of the deep sofa. I told him as we went what I was going to do and why, and then I pushed him down onto the sofa. He can't get out of it on his own, so there he was, safe. And I got the dishes done. When I went to collect him later, I asked him how angry he was - just annoyed or filled with white hot rage? He said "white hot rage", but then I hugged him and we laughed and moved on!
Yesterday he was also insisting on wandering while I was trying to make dinner, having planned to make one of his favorites. I started to get upset, and then decided not to. The dinner was for his pleasure, after all, and it would keep, and there were leftovers I could reheat, so I helped him walk around the house (he needs total support for that) and then asked if he would be interested in watching a documentary for a while and he agreed to sit while I heated the leftovers, all tuckered out. Much better for us both. I did some of the prep for tonight's dinner at that point, too. Here's hoping I can get to it.
I admire very much what you are doing, Gracie, taking care of your sister AND your father. You are a champ. Hang on. It's all hard, but it's also temporary, and we are all in this together. Love and peace, Easterncedar
Oh, it all sounds so familiar! I need to practice on keeping her "dancing" and tire her out. I recently had to put a chair alarm on her chair, cause she can get up very quietly until I hear a crash. You're right about distracting them, it can be very beneficial.
You hang in there too. What is it with the vise grips? Geez! And they know just where to squeeze to get the maximum effect. Ouch!!!!
Oops! I did it again! Now that I have kept reading...Gracie is your puppy! Sorry. I hope I have it all straightened out now. I have to ask, though, Becky, you sound so young, but your Dad is 100? I can see you've got some tough genes, but what a lot you are dealing with, a lot for anyone, young or old. Yow. I think maybe you need another trip to Clearwater. Love, Ec
Lol! Maybe I shouldn't have gotten Gracie involved in all of this. But, she helps me maintain my sanity and she has to deal with both my dad and my sister,too. Poor thing, she probably thinks we're all certifiable. Hehe!
As far as Clearwater goes, I've got my flight reservations made for this January, just in time for my 60th birthday. Yeah! Thanks for the "sound so young", well, I'm taking that and running with it. Lol!
Not had experience quite as bad but my husband does verbally vent frustration at me and appears very aggressive, so unlike his character. He also gets fixed on things a bit OCD , on hindsight he became OCD on things about 2 years before diagnosed. Having read the psp association guidelines for health workers on this illness I think these behaviour traits are part of the struggle with this illness. I'd say ignore it, she will have put it in back of her mind by now. Xx
Don't feel bad. That's totally a human reaction to a building of stress. I would suggest seriously looking at getting some time off for yourself. You will start to hate your life. I just need to not go to my Dad's sometimes and we have had terrible fights. I was wondering if anyone else's loved one or someone with psp noticed having compulsive behavior tendencies before they got psp? It is very weird, cause my dad always had a temper, explosive outbursts, no patience, odc and now he gets a disease to make all this worse. So odd.
Dear Gracie. How alarming this must have been. I have had some experience dealing with perseverating. If you try to stop them you will get hurt. They will knock you over or any one or anything that gets in their way. It is like trying to keep water from running down hill. The best you can do is to divert their attention if that does not work get out of the way. It is something in the brain it becomes completely focused on something and they can not stop themselves from acting on it. It is hard to keep rationally detached when it is someone you love. Once UT becomes a power struggel it can get out of control quickly. Back off if this happens and five minutes later ttey can be very Compliant and not remember their previous reaction. Hugs You doing a wonderful thing looking after your sister as you do. It is a learn as you go and always changing.
Where did find out this information? I haven't run across perseverating. And you made a reference to "UT", what's that? Lol! If it's something obvious, blame it on lack of sleep. Haha! We spend so much of our time trying to keep our loved ones safe, it didn't dawn on me to stand back and see what happens. This disease has the biggest learning curve I've ever experienced. It's mind-blowing what I've crammed in my head in the last 2 years. I feel like I've earned a PhD. Lol! Thanks so much for the info.
Thank you for your kind words and helpful advice. I Love you all!
God Bless,
Becky
Oh my, the things that go with this disease are so awful. I am so sorry for what you had to go through with your sister. I've never had my hubby become physical but stubborn to the point that I could scream. I was trying to make headway about a problem with our insurance company while in the background he was up and down and all around. I walked with the phone in my hand while coaxing him back to the chair at least 20 times while on this call. Then he gets fixated about something (there is NOTHING) in his hand that he must go over to the garbage to throw out .... this is all day long plus he then washes his hands. I am so tense and mentally tired that around 4:00 I fall asleep in a chair next to his. He use to leave the room and wander once I fell asleep. I had my son install an alarm on the door. If he leaves the room, the alarm wakes me up. We do what we can and plod on day by day. Many hugs to you. I hope Sis has calmed down.
Oh yes, I have been there, exactly. Maddening. I sometimes think this whole experience came about to make me a better and a patient person. No one would ever have thought from my history as a solitary grouch that I would end up taking care of anyone, but here I am. Still learning...
Hi yes my dad is very unpredictable bless him. I just try to remember it is not my dad but this awful disease. Like I've said before my dad doesn't swear but has told me on more than one occasion to f*** off and has pushed and squeezed my hand so tight its brought tears to my eyes. He has thrown his Zimmer frame at the caters and has scratched and tried to punch them. He doesn't seem to remember anything or maybe he does but hates himself for behaving like he has I just don't know. The last few days have been lovely dad is wonderful just my dad and it's lovely just cuddling and spending time with him but there's always a tomorrow and you never know what you are going to get. I've had such great advice here and it really helps stay strong and treasure the good days. Big hugs xxx
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Hooray! The hoist has finally arrived.
Dad's final good deed
PSP can be easily managed.
