Have been following all ur posts lately. When i compare my dads condition to ur loved ones suffering from PSP i wonder if its the same or not. My dad doesnt listen to anyone. He is too restless at all times. He keeps ringing the bell all day n night wthout any reason. We hav actually kept a bell by his bedside so that he can ring it weneva he needs something. He wants to be walkd to the hall frm his bedroom and as soon as he is made to sit in the hall he wnats to go back to his bed. This happens all through the day. Is this a part of the disease? Sometimes he just comes out of his bedroom without calling us for help n he falls down. He has been stitched up on his head many a times. Today he fell on his mouth n lost 2 of his front teeth n his nose too started to bleed. Y isnt he co operating with us? Is it common? Or dont they understand anything at all? Does this happen with u all too or is it jist my dad behaving like this?
Dad is uncontrollable..too adamant - PSP Association
Dad is uncontrollable..too adamant
Yes, this is unfortunately part of the disease, that stubbornness and inability to grasp that walking is dangerous. The disease strikes everyone a bit differently, but this is very common and can't be helped, I'm afraid; the patient really can't be blamed - or convinced to change his or her ways - truly! Even bad injuries won't seem to serve as a warning, as you'd think they must. Hang on; the only certain thing is that whatever you are going through WILL change on its own, for better or worse! Love and peace and sympathy, Easterncedar
You have just described my husband 3 years ago, except he still has his teeth. Those living with PSP appear stubborn, doing the opposite to what they have been asked to do and putting themselves in danger. From what my husband said when he could speak, he couldn't understand why I didn't want him to do things. He thought he was capable of doing everything he could do prior to PSP. He didn't want to annoy me but couldn't understand why I was restricting him. When I asked him why he constantly rang his bell, got out of his chair without me being there etc, his reply was, "Because I can".
Sadly there will come a time when your dad won't be able to do any of these things. As they go through the different stages all we can do is manage them the best we can and continue to love them knowing they can't help their actions and can't understand what is happening to them.
I do hope your dad doesn't do himself any serious damage although if he is anything like my husband, he may manage to do a good job demolishing the home.
Best wishes.
X
Yes my husband is the same can never sit still even though out the night he just cat naps for a short time much love to you both xx
Go and see a doctor. A small dose of any of the SSRI Anxiolytics might help. Citalopram is first choice. They help folk settle a little. Low 'drug' effect and non addictive. Beware Diazapines, they are heavily sedating and can aggravate falls. (Clonazepam, Valium et. al.)
I am not a Dr... Its just what works for us.
Best
Kevin
I think it's part of Psp, it brings out the most stubborn and awkward behaviour however I do think it's a control thing....they have no control, so where, they can, they will try, driving you loopy loo in the process! It's very hard to fight against and sometimes impossible!! So just try and explain to your dad your trying to keep him safe and avoiding injuries. Tonight I sit here with my bed bound dad, remote control in his hand, insisting there's something on itv he wants to watch (there isn't) dad is unable to change channel, but I think hold the remote, if it makes you feel more in control, love him! None of this is easy! 😓
Does your dad have a diagnosis...has he seen a neurologist?
Yes. Its been almost 5 yrs now. Have been to neurologist n they hav confirmed its a PSP. N he has been deteriorating ever since. What saddens me is he sometimes tries to wake up on his own n dress himself up saying he wants to go to the pharmacy or to the bank or anywhere. We see to it that he is taken out of the house for a drivr for fresh air once in two weeks. But he gets restless n too tired when out. His kness bend if he is made to walk even frm the car to the house door n he gets breathless. Feel really sad to see anyone go through all this.
yes, it is truly heartbreaking. My sympathies, reenaarshad, peace, easterncedar
I am sure he has a wheelchair...My husbands knees especially the right have begun to buckle...and with the right foot freezing we have "man down" so he has pretty much taken to the wheel chair idea....and do take dad out ...I don't know if it will stop the sleep walking, or other cranky behavior, but he may like going to the library for five minutes or the park...it doesn't have to be long and granted getting him in the car can be longer than the trip itself...but it's a break....when B sleepwalks I tell him that this or that place is closed and we will go in the morning.....it's now 2 am...I must say..since he's had the catheter...(which I thought would be a Godsend to sleeping) he has sleepwalked all the time!!!...This disease sure aint 'one size fits all' , is it?
AVB
He has a wheelchair but refuses to sit on it. Whenever we take him out he gets very restless and insists on going back home. We also try taking him to his side of the family so that he can have a chit chat n feel better but as i said he wants to get back home. Is the catheter helpful? It should be uncomfortable for them right. With great difficulty we have managed to convince dad to wear adult pampers. Took 2 months for him to agree to it. He would kick mom wenever she used to try to make him wear it. And in the midnite he would take them off and throw it and then we would hear a thud in the bathroom. The worst part is he is too heavy to b lifted and i think they find it difficult to co operate while being picked. I mean they leave themselves very loose and we fail to pick him up and then he has to drag himself to the cot.he somehow manages to push himself till the cot n then we pull him up to the bed. Aaarghh!!!
I agreeing have psp and I is ,v difficul to,love with
Op,kill on iuk
Hugs n love to u!!
U r describing my dad condition right now as if you were here with us.. i was thinking he is intended to torture us and i was wondering why. Now i understand that it is part of the disease and so i try to calm myself as much as i can. Not everytime it works but i am trying my best.. good luck xx
Same here. We too try a lot to keep our patience but at times lose it. Feel sorry too at times but cant really help it. Thers no hope and nothing one can do..just live with it. Wish he could atleast talk n we could understand what he speaks..atleast we could sit and have a chit chat with him or maybe he could talk to hia frends n family over the phone. But No..this disease takes away everything..from eyesight to speech to walking to holding to eating to drinking to everything. It just devours the whole of u.
K1 may have a good idea for your father.He may respond to an anti depressant or anti anxiety mes....Go to his Dr. talk about this....If you can get some help this way that is good....You too need help in the form of taking breaks away from dad....kind of get your head out of the fog of PSP....same like your mum...make sure everyone is getting the care they need.....Heady has the right idea...taking herself out to the spa....let her husband have some 100% attention from people at a respite center...take care take dad to the dr, take you and mom away from PSP for awhile!
AVB
Yes dats true. I stay in Dubai whereas my parents are in India. So its mom who does all the chores. N i feel sorry for her. I keep going home often n we hav a maid as well who takes care of dad as in from morning 9 to eve 6. Gives him bath,takes him to the bathroom, feeds him. During the day time he is ok..he sleeps his day off but as soon as the maid leaves he gets restless. So mom has night duty without any sleep n rest. I have checked for hospices in my city but sadly there arent any. Dont even feel like going home anymore. Cant see the situation they are in. Its so disturbing. Breaks my heart to stand still and see and not being able to do anything about it all.
I know darling...but that your dad has a nurse in the day...take your mom out....go...forget PSP for a while...you gotta take care momma or you be having 2 patients....I don't want to scare you but the caregivers health is VERY important and fragile......we say stay strong....and yet it is we who collapse more often than not....Get a scheduled moms day out every week. so that she knows that in 6 more days, " I am going to...."or "only three more days till I go to"....It gives her soemthing to look forward to..,.with the day nurse, she has the opportunity . Now she just needs to find something good for her once (or more) a week! And believe it or not, this will help you too!
AVB
Yes absolutely. My sister who was staying abroad as well has gone down to india for good with her daughter and thats such a great relief for me and mom. Atleast i know now shes not alone. Now they keep going out for movies and lunches but yes moms mind is always back at home as to hope he hasnt fallen hope hes ok. Thats natural i guess. Moms health also has gone down, lost around 10kgs and has migraines and high bp. Shes not quite a strong lady..she panics on little things. Cant do much about dad even if we wish to. Just thinking how much worser can it get than this! Love and hugs to u!!
What you're describing comes right out of the PSP Playbook. Been there, done that.
God bless you!
Ketchupman
Oh you are describing my husband to a T. I think it is part of the disease but also the will to remain in control. For example, when I say to my husband, "why did you go out and walk without me on the grass, you could trip on the roots from the trees?", he inevitably answers, "because I CAN!" Other times he looks at me like he has never heard me say something is dangerous to do! He is not supposed to walk without his rollator. Even his Dr. has told him this. Yet, he constantly walks around without it and tells me he doesn't need it. So, I come to the conclusion that there is a lot involved.....the will and the disease. Not easy and frustrating for him and me. I pray a lot for patience and the realization that it is not his fault. My sympathy and prayers go out to you.
Well, this sounds famiiar. Charles fell and knocked out his front tooth. He falls all the time and is so restless all night.
He doesn't listen and tries to do things anyway, resulting in any number of problems.
Last week he fell on the coffee table with two large head gashes. I have sold the coffee table!
I yell and then chastise myself because I can't help it. It's human nature but he just keeps doing it.
Hang in there, we are here for you.
Cuttercat
So its like everyone is going through the same phase. Isnt it? All our furniture has been smashed n shattered..leave alone the glass even the wooden ones are broken. My dad is quite a huge man with a strong personality. So it also gets difficult to walk him around. Mom has fallen along with him so many times and hurt herself too. Yelling never ends and then feel guilty about it too and then we end up yelling all over again lolz. Its always like "dont u understand..u will do big damage to urself if u dont listen to us. U have been lucky so far that u havent had any fractures,if that happens u wont b able to get outta bed at all. Do u want us to tie u down to the bed for ur own safety??"
Yep, I hear myself in your reply. Thank you!! It helps me. Doesn't help us per se but we are not alone.
Cuttercat
Sounds like my hubby. The neurologists describe it as impulsivity but I would add bloody mindedness to that description too!! Sadly there does not seem to be any way they control this though counselling and night time sedation have helped us.
Yes sadly that is all part of PSP, sometimes I think because they were able to do it before that they still think they can, we really don't know why it's part of the brain that is not working, as far as the falls, I have suggested this before get him a helmet so when he does fall he won't have head and face trauma, I look at my brothers helmet and see all the dents starches and marks and think if he did'nt have a helmet it would have been his face or head. Nettie
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