Cognitive problems related to PSP

I'm wondering about cognitive problems. My husband has been getting up EVERY night about an hour after he goes to bed, about the time I am ready to hit the hay. He says he has to pee, so I get him up and off he goes, then he heads out to the kitchen and proceeds to eat yogurt, which takes him a long time, an hour or so. I have to wait up because he can't get back into bed himself. It's like a child that doesn't want to go to bed. I've talked to him about this but it doesn't seem to hit home. Last night earlier on, he, for whatever reason, decided not to use his cane or walker even after I mentioned it... and of course had a few falls. It seems like spiteful childlike behavior. Also this week he told me the home care aid ran his tube feed in about half the proper time, and another aid fell asleep while monitoring a tube feed, I'm not sure if there is any truth to this. I don't know if this is signs of cognitive deterioration or what to think. Has anyone else seen these kinds of behaviors? I'm not sure what to expect for cognitive problems related to PSP. I could use some insight (and some sleep) :)

joan

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  • Many on this forum will give their practical experiences similar to yours. PSP is associated with Dysexecutive syndrome where the sufferer has trouble with complex tasks, but emotionally it makes it difficult for them to regulate their emotions. They can have mood swings, be self-centred, rude and stubborn. This results from damage to the brain cortex, but in PSP other areas are affected which also alter normal emotions ( including excessive laughing or crying).

    I'm sure you are really concerned about your husband's behaviour, but it's all part of this awful disease's symptoms.

    My wife has had personality changes with PSP along with a lot of irritabilty (mainly related to her inability to communicate her desires).

  • I can relate. Esp to spiteful childlike behavior. I wonder if other carers go thru same. I think those with psp have diffrnt behavior. Ie re yogurt

  • hi i hav epsp and have childlike behaviour (so says my partner)and am also selfish and self centred (says he) i do not wtjhink i have changed tha tmuch but have to acccept the excessive crying which i do a tthe drop fo a hat.

    i tooo get v frustrated when i cannot do simple things and drop and break things and all the other probelms which coem iwth balanac eproblems/ co -ordination probs /speech probs and so on

    and my typign(!) is so terrible now

    BUT there is a fwd thing on the web which says if the beginning and end letters of a word r in the right order then you can still read it ok

    so lo jIll

    :-)

  • Jill , your typing is grand , I have no problem reading it ... xxxxx

  • Yes Mum was like this too, it didn't last for long. I missed it when she was more resigned /compliant but while it was going on I felt quite frustrated. I tried not to show it but it was very hard! It was one of the reasons I couldn't cope with her on my own anymore.Even when I had carers coming in I was still having to go sort out issues such as she either had already gone to bed when they arrived and they couldn't give her medication or she was refusing to go while they were there so I would have to go and get her into bed after they left. This was in addition to all my other visits in the day and spending 2-4 hours with her on some of them so it was exhausting as I was also trying to slot in working too.

    I could understand where it was coming from. She never really knew n advance when she wanted to go to bed and it changed almost weekly. For a while when she went into the care home she insisted on getting up and having a shower at 3 am. The night staff were absolutely brilliant and just let her do it..Again, it didn't last for long, a few months at the most. It was almost as if she was trying things out or testing people. If we went along with it the fun seemed to go out of it LOL

    I did feel her body clock often went off on its own course.

    Dianne x

  • Hi Laroux, Your husband still thinks everything is the same as before psp, and is carrying on as if nothing is different, but i would take note of what he says about the carers, ours used to be asleep when i got home from shopping, she had been on the night shift as well so no surprise, i made drinks sandwiches and we sat for lunch she only woke up when we were laughing at her and she went in to work mode instantly, Hubby shouldn't lie with psp so i would mention to the carers that he gets a little frightened when they fall asleep? might work! remember ask them how they feed and ask questions some don't do the right thing?

    They need to know you know whats going on, tell them he tells you everything. good luck he should settle down soon.

  • I have noticed cognitive issues in my wife. Seems the brain functions great, for the most part. However, remembering things like "You can't back up, you'll fall" or normal routine things you want them to do, are an issue. Part of it could be that they have done things all their lives and now the brain wants to think that they still can do them like before PSP. That would be very understandable. With PSP I'm finding that the brain works well but VERY much slower. Gathering thoughts to respond to questions or to verbalize a request just takes longer. I can see how this frustrates her because she knows the response but it just won't come out quickly. This is why PSP patients don't jump into converstations well. What we do normally and quickly like jumping from topic to topic isn't in their PSP brain functionallity.

    Perhaps your husband is going to bed too early. Maybe you could get him to take something to eat before bedtime.

    As frustrating dealing with our PSP loved one can be we must realize that it must also be VERY difficult for them. I get frustrated at times, I think we caregivers all do. We just have to limit those times, bite our tongues at times, and make the best of this terrible situation we are in. My God have mercy on us all.

    Jimbo

  • Jimbo's comment about going to bed too early is a good one. We are rarely in bed before 12.30 am now as my husband would get up just as I'd dozed off. He now takes a temazepam once we are upstairs and I usually get nearly 4 hours sleep before he gets up. He seems to wake at 4.15 and again at 5.15 and then wants to go downstairs at 7.15. I sometimes manage to persuade him to get back in bed for another half hour. I try and catnap just after lunch if we are at home. I did drop off at the monthly U3A meeting whilst listening to a speaker the other day. My husband and I both woke up to applause. Apparently she was very interesting.

    Nanna B

  • I have experience with this - PSP people cannot help it. OCD behaviors are common and some halucinations, muscle spasms give them the urge to get up and move around etc. This does not mean that they are not cognitive - just means things are happening to their body that they cannot control. You may want to consider using amitriptlyne at night and/or small doses of clonazepam to help with longer periods of sleep. My dad did not sleep through the night until he was really far along and then he slept all the time. I know its maddening now but believe me- you will miss it.

  • thanks! OCD make sense for sure! he has been taking clonazepam for about a year now, and has started taking 10mg of amitriptyline about 6 weeks ago. maybe not enough.

    joan

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