Has anyone had experience with aggression and PSP. When dad gets upset over change in routine due to doctors appt or gets over tired or sometimes because he is frustrated because he can't say what he wants to say, he will twist wrists on either me or my mom when we are assisting him in his walking. It doesn't hurt me much but it really bruises mom. I've told him that its okay to be upset but not okay to hurt anyone. His dementia medicine was just increased today. He wanted to go to bed but he gets right back up and when asked where he wants to go, he says bed.
He also wants to sit in his recliner during the day. It's in the living room. He wants it completely quiet, no tv, no radio or music of any kind, and curtain shut so it is dark. He wants me to sit with him while he is in his recliner but I cannot talk or he gets upset.
We recently moved his other recliner into mom and dads bedroom which is right off the living room because when company comes its hard to sit in the dark . The holiday is coming and one of my dads oldest friends is flying in this week, so I left the curtains open today and suggested that when he wants to take a nap or rest (he says "quiet time"), we cam help him into his bedroom and he can either lay in his bed or sit in the recliner so that it would be quiet and dark. He became angry and when mom leaned over to give him a kiss he grabbed her wrist and twisted it so hard that mom screamed out.
He is on a waiting list for the VA home but I was hoping to be able to keep taking care of him at home.
I'm hoping someone has some advise to help with this issue.
Thank you so much
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Momto5
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My husband also very aggressive sometimes he also doesn't want any noise and he tells me to off TV if he is in aggressive mood I do not stay near and he calms down after sometime
Hi , sorry to hear about what you are all going through. My dad is over 5 years into PSP now and it seems that there is just no end to the things it affects, as we are finding out as time goes on.
My dad seems to get frustrated and angry a lot more now at little things that never would have bothered him before, I guess because he can't do a lot for himself anymore. Its hard when there's other people round but I just try and keep him calm till he feels better. You are trying your best and that's all yu can do xx
I think you will find the aggression will ease when you are not his main caregiver. My mum started saying unkind things to me and rebelling against advice when I was helping her and I worried she would get worse and it would be awful. However, once she was in a care home she was her lovely self again, albeit with the odd cutting remark if she was having a bad day and needed me to help but wanted to try herself first Providing I always asked first she would be fine. It didn't get any worse and she was much better when we got our mother /daughter relationship back more. Although I still needed to do more and more for her each day she accepted it better as it wasn't everything. I think in the descriptor it says that they lose their inhibitions with others but not close family and I think she did find it embarrassing for me to be doing her ultimate personal care and cleaning up after her. Mum even resisted me helping her to eat initially but realised she could no longer do it herself and eventually resigned. I just admired her determination and independence and respected that whenever I could. The anger does go but in a strange way you will miss it.
Hi, Loved your comments. I must admit I am amazed that my wife has accepted me helping with everything from taking pants down to go potty and back up afterward to brushing her teeth, washing her hair and conditioner, removing toenail polish and repainting the nails, applying deoderant, not to mention shaving legs. Once in the shower she does wash herself just not her hair. We have a chair in the shower so she stands (holds railings) for part and sits for part. Don't ask me how it all happened, it just did one by one. She was a very sweet and quiet person before PSP and maybe that is part of the reason. We are two to three years into PSP. She walks with a walker at home, wheelchair or transport chair outside the home. Balance is very bad with lots of falls. That's the worst part of it all to this point. Her brain is still sharp, memory sharp, but can only concentrate on one thing at a time. Responses to communication is still good, but again, slow. Your input I find helpful.
Dark tinted glasses with the wrap round side shades help a lot. Bright light does affect them badly. The stubborn-ness and aggression could be mostly frustration at not being able to do the simplest things and the fact that there will never be an improvement in abilities.
My husband was very aggressive in the earlier stages of psp, but as it has progressed it has become less.
If the aggression was really bad, I would walk away and give him a chance to calm down, I never just accepted it, and did try very hard to not retaliated. This approach sort of worked.
They increased his dementia medicine and he seems calmer but has a very dry mouth. Keeps drinking water. I closed the one set of curtains that let's in the morning light and that has helped, feel selfish for wanting more light instead of putting his needs first. I think we are going to get some wrist guards so when he tries to twist moms wrist they will have some protection. Don't know what else to do except try and keep him calm. Worried about Easter with all the company. I don't like to see him agitated.
I'm not an expert but I believe that what the disposition of a person is before PSP will somewhat dictate their actions with PSP. Perhaps he is just VERY frustrated which we can all understand. However, taking physical action because you are frustrated should not be tolerated in any way. If it were me and he did something physical I'd shout STOP!! then quietly tell him that type of thing will NOT be allowed. I'd yell STOP as loud as possible to make sure he gets the point. This is what I'd do with my wife IF and when she becomes angry and physically or verbally abusive. Caregiving is a difficult thing and our lives have to change in the process. Having said that, I don't believe in changing the basics of your comfort in exchange for the patient. I'm talking about TV on, lights on, etc. You have the right idea about a chair in the bedroom he can use if he wants dark and quiet in the daytime. If he is getting away with even a small abusive action now it could escalate if not stopped.
Jimbo
Mum needed dark glasses all the time in the end as her eyes would just stream and she would sit with them closed all the time. I'd have to drum it in to the carers as mum would never complain. Another thing to try with any different behaviour( eg stripping off, mean comments, hurting etc) is distraction. They can become fixated on things and tense which sometimes gives off aggression so you can try leaving it a while or asking them how they would like to do "it" or as you said leaving them for a few minute to think it over. It all helps to diffuse things. I know I would get as fixated on doing something as mum would on NOT doing it! So we were as bad as each other sometimes! I think it is hard for a parent to accept personal care from their children, especially the generation mum was from when everything was all kept very secret and hush hush. Even though mum did not have dementia she still made inappropriate choices because she really felt quite normal in herself when sitting or laying, hence the falls etc as soon as we turned our backs.
I've found the same to be true as the input from Jimbo and also from daughterno1 . My sister with PSP became very sensitive to light, though it has decreased greatly for whatever reason since she's been living with us. Her personality traits have become stronger in some aspects, since becoming ill. This is referred to as "disinhibition" in the PSP book . As daughterno1 said , people lose their inhibitions in as we've seen , very individualized ways! Add that symptom to the all around frustration of having PSP and all that it entails, and it's pretty incredible that most people with PSP cope as well as they do!
My sister's always been totally self sufficient and in charge. She was also impatient , rarely relaxed, and was always very driven with everything, an amazingly creative and artistic person in her public and private life, though the demands she placed on herself were also placed upon family members which understandably created discord at times.
With the disinhibition of PSP , these aspects of her personality have become more pronounced, though if an unreasonable behavior is kindly and calmly pointed out to her, she is able to acknowledge it and realize the inappropriateness of it. It's just very difficult for her to do so and it must be horrible (as she says herself) to not be able to independently perform tasks which healthy people don't even have to think about. She feels best and most calm in quiet situations with limited stimuli and at this point is to a great extant physically and mentally independent.
As Jim said, it appears that the personality that was present before PSP continues .It seems that the people who had the most upbeat and positive personalities before they became ill, have a greater advantage when it comes to coping with the difficulties that are thrust upon them by illness,any illness, and certainly many family members have verified this in speaking about their loved ones. PSP's effect on the brain, which is individualized to some extant causes many shared challenges along with ones unique to each person.
I just keep hoping that some day soon there will be more effective approaches to deal with the causes of PSP . High doses of CO-Q 10 and eating cocoanut oil seem to be helpful in slowing its progression and I'm so thankful for these , but as with so many other rare illnesses, the solutions aren't available....yet! As a caregiver, I'm really inspired by reading about all of the courage, love , sense of humor, and dedication of both PSP sufferers and their loved ones. This along with people reporting on what has helped with certain symptoms/problems really makes all the difference !
I keep trying the distraction and sometimes it works and sometimes not.
I don't think I could ever yell at him because he is my dad. I was raised to be respectful of my elders.
My dad had very rough up bringing. His father passed away when my father was only 3. His step father was not the nicest and he eventually joined the Air Force and met my mom a while later. They were married and he was 18 and my mom was 16. They have been married for 57 years. After the service he bought a farm, moved all of us and helped raise us 4 kids. He taught us about morals and values, respecting others and about following through with a promise. He is the type of man who would give you the shirt off his back and never ask for anything in return. He believed a handshake was as good as a contract and always followed through with whatever he said he would do. You don't give someone your word and shake on it and not honor it. If you can't stand behind your own name then you can't expect respect. That is my father, my daddy.
I could never yell at him because of his frustration over being a prisoner in his own body.
I agree that whatever the personality was before affects how they handle the disease. He was always in control and took care of everything. Now he can't even feed himself, one of many other things that he has been robbed of with PSP.
To those of you who suffer from PSP, my heart is heavy for you and if I could help you in anyway I would without hesitation. I pray for comfort, ease of pain and that there is someone in your life that will be there to help you, guide you and cry with you. Someone who will hold you and never leave you until The Lord calls you home.
To all the caregivers, I pray for strength and guidance, a strong soul and gentle patience. I hope that everything you do is blessed and you find some peace of mind when one of those difficult days come and sometimes lasts longer. I pray that you also have someone to talk too and someone who can give you a hand when you need it.
I am here for advice and comforting words and all of you have given that to me. Thank you!
Hi Mumto5, you have heaps of answers but hear it from a different angle. My hubby was starting to be a little aggressive and would even fight me for the TV remote, lifting his stick to hit me? don't know if he was joking or not. but i wasn't when i said to him If you hit me i may end up in hospital and you in home? and if that happens you will need to move out to a care home as i don't deserve to be hit, i know it's the psp making you act like this, and i promised to take care of you for as long as i'm able, but i wont be hit by you so tell me what you would like to do? it only happened 2 more times after that and then no more so i think it's just one part of the brain being stimulated more than the others. Also i never let hubby move without his hands on my shoulders( away from the neck) as they progress you probably wont see these symptoms again, so just tell him you love him but these things need to be done. good luck hope it's solved soon. oh he must be really bad to take dementia medication? if this is the case you may need to seriously think about a home, talk to your visiting nurse or nearest association about it they will have seen a lot more cases of PSP.
Dad had an appt today with his neurologist. He told us that he thought dad was nearing the end and recommended hospice. We are suppose to meet with them soon to get hospice started. He also said that he thinks 6-9 months left.
Not sure how to feel. I know it's possible for him to live longer but I also know that he is never going to be cured. I don't want him or mom to suffer anymore. Really hits home when someone else tells you that the end is coming.
Hi Momto5.We had very serious problems with my dad's aggression for about 3-4 months.Now he is much more calmer.He did the same thing you mentioned, twisting wrists, he was pulling our clothes and generally he was trying to hit us.He is on a low dose of Quetiapine (25mg a day) and i think it helps a bit, even though for my father the main reason for the severe aggression was the fact that we had stopped a benzodiazepine drug too steeply.I read your description about your father's current condition and it really seems strange to me that the doctor gives him 6-9 months left.He seems strong, still talks and his mobility isn't so bad.Of course, i am not a doctor, i write what i write from what i 've read for this terrible disease.Generally, i have came to the conclusion that it's never easy to tell "how much is left" in psp.Anyway, from my father's experience, i also believe that hospice or hospitalization makes psp patients decline rapidly, i believe keeping a psp patient home is the only and best solution.I hope this helps, i send you and your family my best wishes, John.
We have always pushed dad to walk even as he weakens. Some days he can walk with help and other days not so much. He only say yes and no and now those words are slurred. I think since we have him home and intend to keep him here that his doctor wants us to have us much help as possible. First palliative care and into hospice but his doctor is leaning toward hospice because of the swallowing issues and he has had mini strokes in the past. He has a dnr and instructions to never get a feeding tube. They did a test and his throat is narrowing and having spasms and its getting worse by the week.
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neck pain
His new thing.
Eating issues
Transferring to toilet
STRESSED AND FUSTRATED
