I apologize that I have been hit or mis. I try to read the various posts before I go to sleep each night, but sometimes the fatigue wins out. I do know that many have lost their loved ones recently and for that I am so very sorry. Such an odd club we all belong to. Mourning the loss of those we love, insidious cuts day by day as we watch them slowly slip away. Finally, they are at peace but then our hearts are irreparably broken.
Today's question for the group, is to find out if any of you have observed radically different behavior or personality changes in your loved one. John worked for the Government for over 38 years. The man was born in a suit and I think you'd have a hard time finding anyone more PC than him. He was VERY buttoned up - almost neurotic if you will. He is not aggressive.
In February he picked out very sexual Valentines for the kids. We of course did not send them. Sometimes he says very hurtful things as if it is now just fact. Last night he told me he knew why he had PSP. When I asked him, he said it was because he had bad/sexual thoughts about someone in our extended family. Needless to say you could have sucked the air right out of me. Fantasies? Is this PSP? Is he a closeted deviate? I am so confused right now because this is not the man I thought I knew. For him to even tell me something like this is odd for him. Can anyone relate? Thanks, Alice
PS He takes no medications
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Abrecheisen53
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I can NOT relate to your stories of the emerging john. My son did not exhibit that behavior, however, I have read other such "shares" of what you describe.... on this site and I believe it IS part of the diseased brain. We all know that it attacks not necessarily in the same way/manner.
You lived with John for many years, the real John, not the diseased brain John. What I believe you are seeing is the hand of his brain disease.
When my son was alive and ill, I literally had NO time to read the shares on this site. It was only AFTER Jeff, my son, died that I had time to read. I definitely relate to your exhaustion. I think the first paragraph of your post covers it well.
I have not directly experienced this with hubby (CBD dx) but our tertiary Neurologist asks the question each visit (annually) "Is he showing any inappropriate behaviour, aggression, hypersexuality, etc?" I believe it's what's called a front-temporal symptom. Some but not all CBD sufferers will encounter it. I read a post months ago, a story from one of our members whose husband had become hypersexual and plagued her with demands for sex at inappropriate times. It may be more rare with PSP patients, but I'll let the more experienced members chime in on that!
I will bet dollars to donuts this is what is happening to your husband and it is part of the PSP. There is no connection to who he really is or was - ie: he was NOT a deviant (!) It is a part of the brain that controls such ?primitive? instincts, going wonky. When they handle food inappropriately - shovelling it in their mouths, it's much the same. We deal with it but it doesn't bother us as much as something to do with sex. That makes us super anxious!
I hope you get more replies on this - particularly how to handle it - and keep in touch with us.
I was telling Larry’s cousin the other day if I hadn’t met his parents and known them for years I would wonder who he was at times as he exhibits their personalities. His father would rant at the drop of a hat. His mother would find fault with everything. He did his father for a few years and now has moved on to his mother.
He also has delusions at time. The more fatigued he is the more pronounced it can be. He will say the strangest things and think they are real. I humor him.
Hypersexuality can present itself in PSP. I googled it and got this page: psp and hypersexuality
Not sure that link will work. Type psp and hypersexuality into google to see the page if the link doesn’t work.
The first paragraph of your post is poetic. It sums things up very well.
Put away 'closet deviant' thoughts. PSP and CBD can bring about personality changes, extensively so. These can be episodic and not always present.
As I have said before here my darling was the most patient, loving and caring person I have ever met. If John was born in a suit she was born with a social workers note pad and pen in her hand. If she came across anger in others her first thought would be what might she have done to trigger it, or what issue were they struggling with. Never an angry word from her. Now, from time to time she has periods where she positively smoulders and where she can be quite nasty. Yes, she has a lot to be angry about, but this presentation is so not her.
Inappropriate sexualization is fairly common with other brain disorders.
I have read quite a lot about PSP and CBD and apart from the odd comment that there might be some behavioural changes or personality changes, I have seen nothing written about precisely what these might be.
So it is I try to weather the bad days and try to make good ones. Yesterday I brought her home smouldering, dreading the emotional punishment she was going to meet out. I firmly, but quietly, explained what she was doing and how hurtful it was and sat at the other end of the room ignoring her. It took a number of tellings and me refusing to respond to hook in requests, but eventually she came round and we cuddled up on the sofa and watched Meryl Streep in 'Hours' for a while before retiring to the garden in the late afternoon sun. She went back with a smile in her pocket and eagerly joined in with the evening entertainment in the home. PSP can be damned hard work!
Sorry - went off on a tangent - I hope this helps a little. These 'changes' can be quite unpleasant and difficult to deal with. I do my best to keep them separate from the person I love and remember.
Morning Kevin, one of the things that I have found the hardest to come to terms with is R's personality change, going from the kindest, most caring and loving person to on occasions now, a monster! Whilst struggling with this I am finding my way through it but the thing that brings me to tears is the fact that if he had just one inkling of his behaviour he would be more than mortified, he would be inconsolable. Knowing that doesn't make life easier for me but it just reminds me that it's the hideous illness, not him. I saw the photo of your Liz when you brought her home recently, looking so serene enjoying the garden - she looked just lovely. That photo doesn't tell the story of what both you and she are going through but it's a lovely photo of the woman that you know and love, and hides the heartache behind it. As you say, best to try to separate the difficult events and remember the person we once knew - I will always be grateful that I was lucky enough to spend 46 years (and hopefully a few more) with such a wonderful man. Have a good day, Kevin. HilsandR
John is still such a sweet gentle soul. I know I am very lucky in that regard. He does often however, just says the craziest, left field remarks. The hurtful ones take me by surprise and I try to just ignore them. These sexual ones surprised me so much because they involved people in the family. I do believe this is just another variation on a theme. I also know he could never act out anything since he is too weak and I am with him 24/7!
Kevin, Liz is so lucky to have you by her side. Be sure to read / watch “ The Gems” post. I found it to be so insightful. Unfortunately, I also found John to have traits of every gem!!!
I've made a mess of things too... I seem to learn a little more slowly than I would wish.
I found it very hard to adjust to these fleeting, but horrible personality traits. But, when they are not there I see my Lizzie gain. They do challenge us very deeply and it's not at all easy for us.
Dan definitely lost his sense of inhibition early on in the disease. He Did a couple embarsssing things that were not at all like him, He lost his ability to share in a conversation so early, that we have no idea exactly what he was thinking.
I have a friend whose husband has Alzheimer’s . She sometimes jokes about all the sexual comments, complaints and observations he makes to her about his wife (actually her). She has been told this is very common with Alzheimer’s patients.
Best of luck. This damn disease can really get you down. If it’s not one thing it’s another.
Interestingly enough I just went to the Milwaukee Alzheimer Assoc. on Friday. I met with a wonderful lady that explained to me that many people who suffer from different types of cognitive impairment, can exhibit a multitude of behavioral problems. Our neurologist kept pushing me to touch base with the Alzheimer Assoc. but I just could not see what PSP and Alzheimer's patients had in common. What I didn't know was that they address all types of cognitive issues and dementia. They have a number of respite programs, support groups, counselors and etc. to take advantage of. She will be sending me links for in home services and etc. as well. I can forward them on to you if you'd like. I really had no idea the scope of services they offer. It's been quite the stressful week, but I felt so much better after talking with her.
I would highly recommend that any of you check into your local chapter if applicable, to see what they have to offer and if it can provide another resource for you.
Dear Alice, I do believe for the caregiver the personality change is the most difficult symptom of psp.
We used to kid John about being born with “wingtip shoes” he was always appropriate in his behavior and his manners were perfect. In the last year, it was like the Thoughts and words were no longer being filtered with reason, and would spew out without regard to others feelings. I never knew if a waitress or a new aquaintence would be offended by his personal remarks. Luckily people were always drawn to John because of his sense of humor and personality and usually took no offense. Towards the end of his life his anger and frustrations were aimed at me if I wasn’t quick enough to respond to his demands or needs, even though I knew it was the disease and not the John I knew and loved, it was very painful.
Anne, please know the psp is insidious and even with an otherwise clear mind it is attacking reason, and thoughts.
Thanks so much Donna - it is so painful. Like I've said before, by the time I'm somewhat of an expert on everything PSP, my services will no longer be needed. That said, I hope when that time comes, I can pay it forward like so many of you do now for all us still struggling.
Thank you so much for raising this issue. My online research has given me the impression that sexually inappropriate behaviour is not common with PSP, so I haven't discussed it on this forum, but it has caused me much despair. My Robert has always been a true gentleman and a gentle man. He is a deeply committed Christian, an elder and a lay preacher. The pre PSP Robert would be absolutely mortified at the behaviours he now displays. Initially he was making suggestive comments to me and others. He was excessively demanding sexually, and then began making crude demands of my sister who was attempting to ease the carer burden by occasionally attending to his night time toileting needs so I could sleep through. Then, when he went into care recently, he began touching nurses inappropriately etc etc. What truly saddens me is that I see some of the staff understandably trying to avoid attending to his needs. They have no idea of the lovely man he has been for the 47 years we've been married. There is other disinhibition as well, but it is the sexual behaviours that are judged most harshly by others. Sad, sad, sad. It is a small comfort to know that others share my experience.
Yes, its horrid. If they are experienced staff they should understand. It must be mortifying for you.
Yes, the issue has been poorly covered in the research. The numbers of us here alone would suggest it is far more common than than what is published.
I wonder if it is because 'behavioural change.' is so part and parcel of temporal / frontal lobe issues. I was regularly looked at with disbelief when I tried to raise these issue with visiting clinicians and GPs. It really made me doubt myself at times and it also meant 'no support' on those issues.
Hi Nayook, It is so hard and sad that this whole sexual behavior aspect is not talked about very much. I have a feeling that there are more of us dealing with this than we realize.
Once I finally thought about what to say to John we talked. I told him that the "bad thoughts" did not cause his PSP. His diseased brain however, caused him to think like that. I told him that my John was nothing like that. I told him about some of the other people on this site that struggle with similar behavioral changes. He seemed so relieved and I think I actually got through to him. He told me that he was so glad he was not a predator. So child like. I went in the bathroom and cried.
This is not an easy journey we are on. I use to tell my children when they misbehaved; that I didn't always like what they did, but that I would always love them. So too with John.
How beautifully said. It was wonderful of you to bring this topic to theforum. The discussion has brought information and a sense of relief to many. Thank you.
I have been watching a series of videos on youtube by Teepa Snow and I would definitely recommend them. She explains really well what happens in the brain and why people with different forms of dementia behave the way they do. Anybody dealing with a person suffering from dementia should watch these. I only started watching yesterday but already I am beginning to understand some of my hubbys reactions, now I need to start putting into practise what she recommends.
Hope this helps, oh and she explains why they lose their inhibitions !
Ben never displayed this type of behaviour but the neurolisist asked if he was gambling or watching porn online so I'm guessing it's not uncommon for this to happen.
These personality changes I think are the hardest to live/deal with.
My husband several years before his diagnosis fell out with his daughter as he was making inappropriate enquiries about her sex life with her husband!!! He lost a filter - could ask inappropriate questions and told me I was becoming very prudish when I challenged him.
Now sadly I have just learnt to accept he has no control over this side of his PSP personality . Though his deteriorating speech which is a challenge and sadness most days is a great cover up now. If he says something inappropriate to friends/Family I just make an excuse or see people did not understand and change subject!!!
Oh Tippy, how clever you are! I sincerely hope your daughters relationship with her dad is back on track. Too important to let this horrible disease win out.
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Losing a loved one to PSP
What an awful year it has been so far.
