I live in US and my husband has been diagnosed with PSP. He is 73 years old and always very healthy. We have been married almost 49 years and have know each other for 59 years! Mild symptoms began almost 4 years ago. Multiple Dr's and we finally have a diagnosis. I post occasionally, but mostly just read other posts for information and support. My husband is still quite functional physically, but does have excessive fatigue and eye fatigue as well. However the past week he had an episode unlike anything so far. He became very rapidly and dramatically agitated with no apparent cause for such extreme behavior. He began accusing me of things, irrational comments, and misinterpreting my replies to he accusations. It was very scary and sooooo sad. It upset me very much to hear him rant at me. I was concerned enough to call my daughter to come over to our house., Which is something I have never done before for this type of reason. He calmed down before my daughter arrived and the next day was back to his new normal and even apologized for his bizarre behavior.
Anyone else have any experiences like this-?
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ncgardener799
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The personality changes are incredibly hard to deal with and so upsetting. My mild mannered husband began with paranoia - accusing me of having an affair this progressed to extreme rages out of the blue or so it seemed, physical aggression - absolutely out of character and incredible impulsivity. I began to learn the signs and was able to divert some of the behaviours but it sadly remained a fixture until he started on antipsychotic medication which greatly reduced the paranoia and rages. We put off using this medication for far to long as we were advised it would sedate him - it calmed the rages, the impulsivity and aggression but never sedated him.
You will learn to manage these personality changes but I would say if it is problematic ask to see a Neuro Psychiatrist who may be able to prescribe medication.
May I ask the name of the anti psychotic. My husband has just been given resperidone but only .5 mg to start. It's not helping at all. Hopefully they will increase the dose or something before I end up in a heap. The rollercoaster is killing me.
My husband was prescribed Quetiapine also a second generation antipsychotic medication. He started at dose of 25mgs but we were allowed to increase this to 75mgs before the 3 month review We increased after 2 weeks when there had been no effect and again 2 weeks later when he seemed to be responding a little. At the 3 month review it was increased up to 100mgs this was the point at which he was calmer ( not sedated) he began to express appropriate emotions and occasional empathy all of which had been lacking for many years. For me it brought a little part of my husband back - must stress a little part - the impulsivity and lack of sleep remained challenging but more of his personality was evident and we had some beautiful and memorable moments in his last few months.
I do hope the Resperidone will be beneficial for your husband too - it may just need a dose increase. Ask for a prescription range i.e 5-20mgs I always found this helpful.
Tippy has replied to you in a way that echoes my experience with my late husband. Sometimes he would remember the episodes and tell friends, in his words, "I was a naughty boy yesterday". When he did remember he would always apologise but eventually he became completely oblivious to it all. He could not separate our life from the TV so a news item, say from a war torn country, would send him into an agitated state urging me to get us out of the house as we were in great danger. He would bang on the windows hoping to alert someone who may be passing by and yell and scream at me that I wasn't taking him seriously and we would all die and it would be my fault. These episodes could last just minutes or go on for much longer. Sometimes I could pacify him, sometimes not.
As Tippy said, you will learn to manage these outbursts once you work out what works best. My heart goes out to you - those episodes with Rod were so difficult and so upsetting - at first I would end up in the garden sobbing behind a rose bush but I did get to grips with it eventually (albeit with a few secret sobs). Do see your medical adviser though just in case there is something else going on that is treatable.
Sending you both my best wishes as you soldier on.
Hils
x
Larry has had some strange delusions I have had to deal with. There is no arguing with him about them. They passed. When he comes out with something totally off the wall I grin and bear it.
Thank you all for answering my concern with strange behavior. Tippy, my husband is starting to behave very much like yours. Hils-Sobbing is exactly what I did-the accusations were so hurtful and not like my husband at all. First I felt so angry and wanted to be defensive, which is NOT my usual reaction, and then all I could do was cry-for him and for me. Thank you all for the advise about trying to cope and or manage these behaviors that are so upsetting. We spoke of it today and I asked if he senses the change in mood and if he does please try to give me a heads up in case I am not catching it before it escalates. Someone once said don't react, retreat!!
If I have regrets is to have responded angrily at my mother when she was delusional.
I am glad to hear you have managed to have that conversation with your beloved husband. I now say to my mother "I know this is not what you really feel in your heart, but it's this illness that makes you so impulsive and angry" and it does calm her. At least it helps me.
The change of personality is one of the hardest things.
My mum even accused her carers then to be a lover of my brother!
This illness is teaching us all to be more and more compassionate, it's heart breaking and so hard!
You are so right Antonella, sometimes it's hard to dig deep for understanding when exhaustion has reduced you to a complete wreck and it's only human to occasionally lose sight of the fact that none of this is their fault. With no treatment or cure for these hideous diseases, compassion is the greatest gift we can give to our loved ones. The time will come when you won't regret your input into making your mum's life as normal for her as is possible and most of all in making her feel loved and included even though the challenges are relentless.
so sorry to hear about your regrets and passing. Sometimes in the grief having a sense of guilt helps us in some way to feel in control, but we know we did and doing the best we can in the circumstances. I hope you can find peace in your heart, as I am sure you have done your very best to cope with the distress of the changes of behaviour of your loved one.
Thank you everyone!! My heart was so broken , I thought I'll never be able to cope with the behavioral changes long term. Your words have given me encouragement and strength. THANK YOU SOOOOO MUCH, xxxooo
I have been guilty of such behaviours from time to time. My wife knows that it's the disease talking... not me. Am I remorseful? Yes - one minute, No - the next. It can't be easy as a caregiver.
Sorry to hear it, and it is so so very difficult in every way to be a caregiver. My aunt had PSP and one thing that might help is that part of her may medications included anti-anxiety pills. This was primarily to relax her muscles. If you can imagine, PSP is like having a 24/7 charlie horse in every muscle of your body without drugs. I often credit the anti anxiety for helping her to cope with all of the limitations both emotional and physical. Hope this might be helpful. Remember to care for yourself, and get some support coming into the home and giving you some rest. Seriously do this. Your own health now, during and after your husband is as important. Wishing you all the best.
Oh -- also meant to say that going to a caregiver support group really saved me. lots of information but also an ability to move through the inevitable guilt that comes from caregiving. Usually your county will have groups at no charge. Check with any hospital, social security office, county aging services, elder services organizations to find ones near you.
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