Is this normal? Does your PSP loved one do some crazy, daring stuff? My guy has always been adventurous, but this was a shocker!!
I had a roof repair company owner looking at our roof yesterday. I knew my guy would hear someone walking on the roof so I told him that the roof company representative was measuring, etc. I then went into the restroom and in those FIVE minutes, my guy got out of bed, walked out the front door and climbed on to the roof with the ladder the roof guy placed on the house. I came out of the restroom and noticed he was gone from the bedroom. I started to call his name and he was no where in the house. I went outside and called him he did not answer. I looked up on the roof at the roof repair representative and he says, "are you looking for your husband?". I said, "yes"! He says, "he is up here"! OMG--I think I went into cardiac arrest! (kidding--but I did freak!) I was in shock! I told the roof guy, "my husband's balance is terrible, he can not see clearly and he will fall"! I didn't even know this roof guy, but he saw the panic on my FACE and knew he better stay right by my husbands side. My husband then says, "honey, can you pass me some trash bags, I need to remove some leaves"! He was so calm and was enjoying himself while I was in a PANIC! I was trying to remain calm, but at the same time was giving him a lecture about his safety and why he went o up on the roof like that! Anyway, he picked up the leaves and the roof representative walked him to the ladder. He first tossed the bag of leaves off the roof and that threw him off balance and the roof rep. grabbed him--he was right on the edge of the roof!! With his vision issues, he had no idea how close to the edge he was. When the roof rep. realized how he was so off balance (like a drunk), he got so close and helped him get to the ladder. He struggled to get on the ladder and I had to tell him to slow down because he was in such a rush to get down. It was so scary. Once he was down, he was white as a ghost, was out of breathe and stumbled his way into the house with me guiding him. He shook as he poured himself a glass of lemonade and then just fell back into his kitchen chair. It took about 10-15 minutes to get his breathing back to normal. We live in South Texas and it was about 88 degrees and humidity is awful right now. He fell while on the roof and gave his knees some terrible scrapes/cuts. In the end, all is okay--he is safe! But my question for you all is does your PSP loved one seem more stubborn and almost daring to do whatever they want? My guy doesn't think about the consequences and it almost seems as if he doesn't care if something does happen to him. Here I am constantly protecting him and he does a crazy thing like climb on the roof when I wasn't looking! Ugh! I was so grateful that the roof guy was young and strong and he could help him down, but I am sure it scared the crap out of him too. That poor roof guy probably never wants to come back here. LOL!
Thank you PSP friends for reading about my PSP problems.
Nikkie
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Ahhhh! That will give you a few grey hairs. In reply to your question, yes. Mine climbed into the loft and I was forever finding him in dangerous situations, up the ladder lopping trees, on steps changing light bulbs, he pulled the whole light fitting down when he grabbed it as he fell. He fell through 2 panes of class in the greenhouse as he decided to plant some seeds, although I'd banned him from the greenhouse and I found him face up in the pond, lower legs still dry and clinging onto the wall with tadpoles swimming around his ears and chin.
He lost the ability to predict danger. Your guy will probably put himself in danger again but hopefully not so dramatic as this episode. You may be able to laugh about it one day.
Tadpoles swimming around his ears and chin made me laugh. Yes, the inability to predict danger is so true. I have seen it happening but the roof incident just SHOCKED me. The sad thing about it is that he is home by himself at times but I am making a career change and will have more time at home with him in the fall.
With those dangerous episodes did you ever think that he wants to hurt himself or is it just the illness and they don't really get the danger of it? It just seems as if might be looking to fall and die. I know that sounds weird but did you ever get that thought? I'm not even sure why I have thought that but as adventurous as my guy is, he was always very cautious and safe. Just strange.
No I think it is just being unaware of the danger. A teenagers doesn't see danger and does idiotic dangerous things. I read the part of the brain that makes them aware isn't developed until later so I think it is that part of the brain that is affected by the Tau protein. Colin couldn't understand my concern. He felt OK, there was nothing wrong with him so why shouldn't he do the things he always had done. It didn't stop until he couldn't walk any more. Even then he flung himself off chairs, bending to pick things up and I have to make sure he is always strapped on his commode and wheelchair and keep his arm chair reclined if he is in it. Before I left work he fell down the stairs vacuuming, something else I'd told him not to do. I had to leave work 6 months after diagnosis as things were getting too dangerous to leave him alone at home.
What a relief NannaB and it makes sense. Thank you for commenting. Sometimes I feel like I over analyze because it is all happening so quickly--- hard to believe that he is just not getting "the danger" when he was always so cautious in the past. He is known as "Indiana Jones" by our family and friends and you add the whole PSP/risk taker/Tau protein def. and he turns into "Indiana Jones and the Hulk" combined. He has done alot of crazy stuff, but the roof incident is at the top of the list!
Our 6 months of this diagnose is next month and I will make my career change in August. So many emotions about that but I got to do it for my guy. He would do it for me.
God bless you, love your big heart, you do it for him because he'd do it for you. My Dad would do it for his wife too, she's 25 years his junior and sometimes I want to tell her, he'd do it for you ya know, but I try to keep my mouth shut since it's already so hard for us all, and beyond hard for Daddy. And she does ok but I've wondered if it's occurred to her, he'd most certainly do it for her, albeit probably not with as much patience, but she's very patient with him most of the time which I know can be challenging.
Nikki, I really tihink that they have times that they think there is nothing wrong with them. Mine walked down the 6 steps from our deck along with his walker. When I saw him he on like the 4th steps and I was afraid to say anything. I just walked down the steps behind him, by then he had dropped his walked and kicked it the rest of the way down the steps. He also does some weird things and his memory is getting worse and worse but then he seems to snap out of it. His walking is worse as well along with the lovely things that go along with PSP. My story for today.
Thanks Audrey. So risky! I agree, the memory is getting worse everyday. The other day he said he paid the yard man and was so convincing. Then I called the yard man and he said he never paid him. I have told him that I need to take care of paying people and that he can write the check or use his cash but I will deliver the $. That is not the first $ incident. Ugh! Lots of confusion but he sounds so convincing. My home related work has doubled because I am having to double check everything or having to do it myself. From car repairs to contacting home repair stuff. This is only the beginning.
Nikki, I take care of everything, paying the bills, he doesn't remember how, to you name it. Have to have something notarized and am trying to figure out if he can come to the bank with me or what. That will depend on how I can get him in the car if he is having a bad day.
Yes, yes, yes, so many scary situations over the years and still happening, I do feel sorry for my poor heart, but it's still beating....very fast mostly, that situation must have scared you so much xxx
Nikki's, oh my gosh I was reading about your husband on the roof thank god he did not fall off, but reading was the same thing I went threw last summer with my brother, of course he wasen't as bad is he is now, we live in the country I as at his house and came home for a few, like 5 minutes I was starting to walk back over I can see just his roof and oh yes that is where he was on top l started running got there climbed up the ladder he was not in sight I about killed myself on the roof went on the other side of the house he had fallen off came within 1 inch to a sender concrete block. He was not hurt could'nt believe he did'nt get hurt. My brother does the same moves fast I just think it's a part of the PSP I just don't think they realize the danger they put themslelves threw or think about the consequences, how scary tho we are so protective and watch them like hocks and they. Still get away at times. Take care and so glad he wase'nt hurt. Blessing to you.
I panicked and my heart skipped a few beats! The poor roof repair guy will probably never come over again because I yelled at him too. This is just another reason to make sure I stay home as many hours possible with my guy. He is still independent but I have noticed he is doing more and more risk-taking activities like that and I just worry all the time. He can be so stubborn too. It sounds like that is normal for PSP patients.
Wondering if your hubby has any problems with his eyes? My brother has glaucoma, cataracts dry eyes plus blurred vision, had him in with a eye surgeon second time in for surgery he developed a film over his eye and had to stop. Took him back for the third time they decided not to do surgery at all,because of the PSP, Doctor said was to dangerous, I bout blindness, which I know can happen with the PSP. Nettie
That is one thing my husband says all the time..."my vision is getting worse everyday" and "I think I am going blind". So I know this PSP is definitely affecting his vision. We went to eye doctor to see if he was a candidate for prisms and since he sees double about 40% of the time, he is not ready for prisms. Tough to see this happening.
Wow what a story!!! Did your husband get scared after he threw the bag of leaves off roof, or before? Bruce does strange things when he sleep walks, but so far it's been in the house!!! Sounds like its' time for hubby to wear a bell or something so that you know where he is at at all time! Well thank goodness he did not get hurt!
Goodluck Lets pray that that does not happen again@
It sure is time for a belt or beeper or something! Yes, please pray that this does not happen again. I mentioned the incident to his massage therapist and he told her he had to get the leaves out of the gutter because no one else was going to do it. Ugh!
When he threw the bags he noticed he was very close to the edge and eyes opened wide! Scary look!!
Nikkie, our house is medium sized, and something that's been a big help is a baby monitor, the type you can hook onto your belt or just carry with you so you can be able to move about the house without having to actually keep your eyes right on him. We got ours used from a thrift store for cheap. It runs off electricity until it's unplugged, that's when the battery use kicks in. I listen to it throughout the night because for the last yr or thereabouts Daddy has needed supervision and care 24/7. At this point he's unable to even get himself out of his hospital bed in his bedroom, but his wife still works outside the home and although she no longer sleeps with him, on many nights before I came to live with them he'd yell for her during the night for one thing or another and wake her up. She was very sleep deprived. Hugs.
Yes, yes, yes. The PSPA have a leaflet about cognition.
My husband did these kind of things, up in the loft, disappearing and walking to the park a couple of miles away, crossing two main roads, climbing to clean the gutter....
Also lots of arguing and generally inappropriate behaviour.
The mental health team said that they could not help as PSP patients can not modify their behaviour, can not assess risk and that he showed signs of frontal temporal lobe damage ( also mentioned in the leaflet )
Unfortunately he is now functionally blind, his eyes only open for a few seconds, but he still does risky things!
I know that plenty of people won't have this, but plenty will, a nurse that I spoke to said that these issues are not spoken of enough, and it feels very isolating. I was put in touch with the hospice, which has helped me immensely as he goes for day care once a week. Being constantly vigilant is exhausting.
You just have to try to think that they have no control over the impulse, not easy!
My husband is on a drug called sertraline, which has helped with anxiety and obsessions about meal times, mileage on the car, or whatever thought he dwelt on too much.
Yes, it's an obsession! Always telling me how I need to drive, where to turn, asks if I turned the turn signal on, reads every sign while we are traveling (I mean every single sign--billboards, street signage, etc), memorizes all the gas prices and where, etc! It s crazy and seems to be driving me crazy!! LOL.
My husband now is on zoloft (sertraline--I think?) and that has helped with relaxing at night. Only been on ir for about a month.
all this is really werid looking back at what George use to do, it all just comes rushing back, he use to go in the basement, and say the house needed propping up, and he would be down there with a car jack and you could hear him turning it, but it would be early in the morning, a lot of shouting, and arguments, children would not come around, because he was so aggressive, he did a lot of weird things, must of been the onset of PSP. He has never done anything like getting on the roof how frightening, know he just sits in his chair, calling me, he gets this bad pain in his groin, and is very agitated when he gets it, any one else have this problem with pains in the groin? I can remember reading about it on the site. Yvonne xxxx
Thank goodness no aggressiveness so far but we are still early stages of PSP. My husband has a horrible pain in his back leg hamstring area but it wraps around to the groin area. It has been unbearable. The pain is always on hit mind. That is why we tried stem cell (StemGenex) injections last week. I hope we see some pain disappear soon. We are desperate for pain relief.
My husband also does this. If I'm around I can stop him. Otherwise he's off !!
He was always an active man and I think he just forgets he can't do things.
I get angry at times because it seems that when I am with him he needs lots of help. But as soon as I'm gone out of sight he can move really fast to do something dangerous. He is always wanting to go on the roof. When we were having roof work I made sure the builders knew the situation.
I know its part of PSP but I don't always believe it.
That is why I need respite in order to be able to relax. I feel alert always.
Someone suggested a bell. Round his neck, like a cat ?
That must have been so scary bet you didn't know how to deal with it without sending him into a panic and making the situation even more dangerous. Ben hasn't attempted anything as dangerous as this but constantly puts himself in risky situations if I don't happen to be with him at the time. Makes caring even more stressful as you have to be on 'rew alert' all the time. Joy of joys of PSP, how I detest this disease. Kate xx
PSP patients are often stubborn and in denial. I have to remind my bride all the time that she can't do things on her own anymore, like getting up out of a chair and walking somewhere. After the second or third step, down she goes. Or attempting to get up off the toilet (or the loo ... for Heady). She immediately falls backwards and gives the porcelain throne a big whack. Each time I tell her (sometime scold her) that she can't be getting up. she just looks at me like I'm crazy and will usually just shrug her shoulders. A few months ago she actually climbed over the bed rails on her hospital bed and landed on the floor .. around 3am. All while still being connected to her PEG feeding machine. Now that she is so far progressed and pretty weak, she hasn't been trying to move much. As much as I hate that, it does give me more peace of mind that she's not into more mischief and going to hurt herself.
(raising hand high) another roof man here with my Daddy omg yes! He fell INTO THE WATER from the top of his boat at the marina (a few years before a correct diagnosis, which was last year,) and he also got up on the roof of the house around that time, too. Is there something about heights that almost attracts? Many thoughts crossed my mind as I read this thread. I too have to remind Daddy he can't DO that and he'll ask Why? I say because you'll fall and get hurt and I dont want to see you get hurt and he'll deny any risk, vocally. When I scold him I hear HIS voice talking to ME as a child, when I was the child, it's so weird and awful and makes me feel disrespectful. One time he asked me, why dont you believe anything I say anymore? I felt lower than dirt but it's because he used to be so smart and capable, he was probably genius level intelligence, I mean he was a VERY smart man. And now, no I dont always trust that what he says is what's real but ever since he said that I've made it a point to try harder to understand what he's trying to say and guess what. I've found that he's right and in his right mind more often than I thought. And someone said sometimes they seem like rebellious teenagers and that too is something I see in Daddy. Like when he used to rise from his chair the INSTANT I walked out of the room, for no real reason other than being a 'bad boy'. Thanks for reading.
I really struggle with exactly that. We agree he won't do something, agree it is risky, agree he will call me to avoid falls. Then he will suddenly stand up, move quickly and do it !! He looks so confused and crestfallen but I can't help getting angry. He has always been a reasonable, considerate man and so seems like a stranger at times.
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