Inconsiderate/Personality Changes

[Granny29335]

My husband was diagnosed March 2023 but he has had symptoms for between two and three years. I have noticed very recently that he seems more inconsiderate of my feelings. He gets up at 2:30 am and wakes me up at 5:00 am to drive him to work. Until recently, he was quiet as a mouse. Lately, he has been playing music on his computer that wakes me up about 4:00. It isn't like him. When I get up, he says he didn't mean to disturb me, but then he does it the next day too. He isn't a passive aggressive person. Does anyone think that this could come from the disease?

[Millidog]

Hi, I think these behaviours are quite common in PSP. Apathy, impulsively and decline in emotional awareness are all symptoms which I think cause the behaviours you speak of and others similar and can make someone appear very demanding and inconsiderate. They can manifest in different ways depending on the individual, for example my husband will changes his mind after saying no to coffee and then wants one NOW when I've just started something else, will get up NOW and need help when he said he was going to stay in bed for an hour, demand something to be done NOW, wanting his eye drops, tablets NOW when they are planned for later, will get up without warning, will turn the TV volume high, keep changing the channels when we're watching something, play with his rise recline chair. ..... if I explain the impact I'll get an apology or silence and then its repeated. When you're busy doing lots of stuff to help and you're tired it's very frustrating and irritating but everything I've tried doesn't work. I'm learning to challenge somethings and let the rest wash over me. I think knowing these behaviours are common to PSP and not deliberate actions can help understand and cope.. although I must admit I do sometimes get angry and frustrated. Take care xx

[Granny29335 in reply to Millidog]

Thank you for responding. We are so soon into this journey that I sometimes wonder if I can be rested enough to do a good job taking care of him as this progresses. I can only do my best.

[Joluu in reply to Granny29335]

Hi sorry to hear you're having to cope with this but the behaviours you describe sound very familiar and definitely related to psp. My mum was a very quiet and considerate lady but now thinks nothing of ringing me at 4 am to demand I go round and take her to the toilet or ring at midnight because she's dropped a tissue. Good luck it's not easy but we can only do our best

[Granny29335 in reply to Joluu]

Thank for your response.

[Marazion]

I’m afraid it’s PSP as same with my mum with her also saying very inappropriate things and lifting her clothing so not ideal when the grandchildren visitors. Eventually she was put on some medication to help her behaviour which we didn’t want to do. Also care wise - she had one full time live in carer then two due to the sleep pattern (also PSP) so needing care at night and so one carer could do day and one nights but then she needed two carers for all transfers, personal care etc etc so we had to move her into nursing care. I hope this is helpful. PSP association are fantastic so do try their helpline, useful resources online if you haven’t already and they have regional support groups if you are in the UK.

[Granny29335 in reply to Marazion]

Thank you.

[LuisRodicioRodicio]

Hi Gran ny29335!

This is the information I have about:

Changes in the character of the patient.

“easterncedar” tells us: “Getting the psp diagnosis is an awful shock, and then it’s such a steep learning curve as you respond to the increasing symptoms. How long ago did you notice something was wrong? This disease affects everyone differently. For some people there is a strong element of dementia, and for others it is all physical. It depends on where the brain damage is centered. Personality changes can be a symptom of the disease or a consequence of getting such a frightening diagnosis. It’s hard to separate. Counseling and antidepressants may be worth considering”.

People with PSP are affected by changes to their thinking which become more apparent as the disease progresses. There are currently no licensed treatments to help with these cognitive problems. A study (2021-07-16) based on MRI by doctors Rittman and Whiteside from the Cambridge Center for Parkinson-plus indicates that PSP patients have less flexible and less efficient brain activity than normal, the more severely the disease affects them. The changes in activity affect not only functions related to the areas most affected by PSP but also affect the entire brain, even when the examination or "tau" pathology appears to be normal.

In our case:

• Control of palliative medication against depression, as well insomnia and anxiety. In our case, one pill of Sertraline-50 at breakfast (depression) and one pill of “Lorazepan-1mg” (insomnia and anxiety), one hour before dinner (*). Of course all these drugs were prescribed by a physician. After around 6,5 years with this medication no appreciable side effects on our case.

(*) I have read that to improve the patient's sleep are using "Melatonin" successfully. Others use “Trazadone”. Ask physician.

Pills can be taken in a spoon of applesauce or similar...this helps it slide down. Also a good pill crusher helps.

A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.

Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.

In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day. If you are interested see:

healthunlocked.com/psp/post...

Kevin_1:

healthunlocked.com/psp/post...

I hope to be useful

Hug and luck.

Luis

[Granny29335 in reply to LuisRodicioRodicio]

Thank you.

[sherlock19]

I absolutely hear you and agree with all the other responses. My husband's behaviour has changed beyond all recognition - it is sad, frustrating and depressing. I liken it to having a third child at the toddler stage when all their needs are immediate. There is no thought given to what else might be happening at the time. Usually it's just irritating, sometimes it's just downright annoying and I have to remember that it is the disease and it's not done deliberately. It's very hard day on day when the behaviours are repeated and of course there is and can be no improvement.

My husband is quite advanced in the disease so is chair bound and you would think that might be easier to manage, but if you don't jump to it then he'll try and get out of the chair (sometimes succeeds and ends up on the floor) or, as with recent events, just try to go to the toilet anyway because I'm not quick enough.

I'm sorry to paint such a bleak picture but today has just been one of those days!

Good luck!

[Granny29335 in reply to sherlock19]

It's okay. I appreciate your honesty.

[daddyt]

Sorry to say, the behavioral changes result from the disease. Knowing doesn't make it any easier for the patient or the caregiver.

Tim

[Granny29335 in reply to daddyt]

Thank you.

[daddyt]

You, and others might find this link helpful l.facebook.com/l.php?u=http...

Click on the link. I know it appears to be a lot of mumble jumble, but it's a safe link.

[Granny29335 in reply to daddyt]

Thank you. I looked up the link and it is very good.

[Leosta]

Sorry to have to tell you that all this is "normal" behaviour but it may not last. My husband seems to have passed through different phases, each one demanding in its own way.

Firstly he would yell for me throughout the night, repeating my name over and over again and I would go to him and he'd want nothing. Back to bed and it would start over again. I was exhausted

That passed.

Then he wanted everything NOW and as others have said it's frustrating and tiring. That passed.

Then he would slide forward on the settee and I would have to haul him up and move him back. 20 mins later he would do it again.

I don't know if that phase has passed because recently he is unable to even walk to the lounge and has passed the day, well afternoons and evenings because he sleeps so long, in bed.

That too brings its difficulties.

Try and get as much help as you can

It seems to vary greatly depending on where you live.

And take as much time out for YOU as you can. YOU are just as important.

Take care x

[Granny29335 in reply to Leosta]

Thank you for your encouragement.

[LFG3]

Hi,

We have had much improved behavior when my husband was prescribed 100 mgs Sertraline ( generic Zoloft) one tablet each morning. Even though the behaviors are extremely annoying and inconsiderate please know they are caused by his diseased brain. Our neurologist told us his bad behavior is caused by the damages in his brain. He is unaware and unable to modify his behavior so technically it is NOT his fault. She said do not take his words or actions personally. That made me realize I had to look at things differently, look at him differently. He is not intentionally behaving badly towards you. It is caused by his disease. ❤️

[Granny29335 in reply to LFG3]

Thank you.

[Lacey23]

I know my husband started exhibiting a change in personality early on in the disease. He was always a kind and loving husband, and all of a sudden he became insensitive of my feelings and a times very mean. In fact, we went to a marriage counselor because I thought our marriage was in trouble. Thank God I stuck by him. I would’ve felt terrible if I left and then found out he had a neurological disease. so yes, definitely the sporadic personality changes are very common with PSP

[Granny29335 in reply to Lacey23]

Early on, I thought the same thing and couldn't understand what was happening to us.

[Lacey23]

if I can be any help to you or if you’d like to vent please reach out. I’ve been through it all. My husband passed 4 years ago. Fondly, joan

[Granny29335 in reply to Lacey23]

Thank you very much!

[pmcdonough1]

Might talk with your doctor about medications that will relieve anxiety. Also ask about Donepizil it does a wonderful job improving metal cognition.