Ok so how does everybody deal with the personality changes of their loved ones my husband has PSP he’s like a stranger
and please don’t say wonder how he feels because that’s what non carers say isn’t it ???
Personality Changes : Ok so how does... - PSP Association
Personality Changes
Written by
Dance1955
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77 Replies
•
In what way has he changed?
Mine went from somebody that bounced around, rushing here, rushing there. Never stopped talking, always had an opinion, that was the right one! Totally neurotic about any illness, to a man that just sat in a chair, watching the loops on Sky news, all day long. Barely saying a word, letting PSP take over. He had a serious dose of apathy, use to drive me mad, but I soon learnt that whilst it was my enemy, Steve could cope with his new life. He was a totally different person, in some ways easier to live with.
I am afraid it's a case of getting to know this man again, finding out his new trigger points. It's hard I know, but worth the effort, some where deep down, he will still be the man you fell in love with.
Sending big hug and much love
Lots of love
Anne
It would help to know what type of personality changes; anger, withdrawn, depressed, childish, clingy? There are different tactics for personality changes but it would help to know more about what you mean.
Could it be a reaction to one of his meds, could he have a UTI?
Are you sleep deprived? Can you get a respite?
I ended up telling myself that my husband’s brain is slowly and painfully being erased. That helped me to deal with him a little better. I live for a glimpse of laughter. It’s rare but I know he’s still in there. I try to live in the moment and I remind myself that everyday is a gift.
I know this isn’t much help. Please elaborate on what the personality changes are and maybe we can provide some tips.
Sending hugs
Xoxo from I SewBears
I’m replying to your post because I’m on this horrible journey from almost totally independent this last Friday night to a complete stranger on Saturday am after a fall.. Mario has been a mild mannered, kind, loving husband and father for for 57 years....I do not know this PSP person who has become a stranger....ranting and raving, angry, restless, hallucinating and confused but sometimes lucid man....discontinued two meds that might be causing it...he is now bedridden, in a hospital bed, totally incontinent with having to hire aides to help me .....I’m now being reduced to my only choice to hope for a fast moving journey...I still feel he’s in there somewhere and keep hoping that he knows that I know by telling him and hearing my voice.
Trying to keep on keeping.....Kathy
So sorry your on the horrible journey too isn’t it horrible it sounds like you have it worse than me my husband doesn’t make hardly a sound but I just get the look or the dreaded stare sometimes I just block it out and pretend it’s not happening what memories will we have
You know I have moved house and don’t even want photos around me really because how
Will we remember them I ask ?
Hugs to you hun 💕💕xx
It’s very hard seeing someone you married change so dramatically. I was a carer of mine but constantly said to myself, “ It’s hard for me but very much harder for him”. That reminded me how he must be feeling. I would sometimes tell him I was frustrated, tired, sad, angry etc but always made sure he knew it wasn’t him making me feel like that but his illness. As others have said, it would be helpful to know how your husband has changed. Mine was never violent so if yours is I can’t relate to it but with all the changes I saw in my husband, the man I married was still in there and wanted to be as he once was. One day I asked him why he never answered me any more and many minutes later he replied, “I did in my head”. Right until his death he showed me that he understood everything I said and what was going on and that I still loved him.......but not the PSP.
XxxX
My husband is longer my loving and caring “rock”.for our family....he has had a devastating personality change to being understanding and agreeable at times to trying to physically strike out at me and also verbally abusive...I just never know what his moods are...he is taking several meds for this and that’s probably why he has the mood swings...one does this and others do that...as of the last two weeks, since his last fall, he is now house bound and unable to walk...I need to hire an amulet to take him by wheelchair to appts....prior to that it was an easy trip for us with his walker...I keep telling him that I LOVE him but HATE this horrible disease for what it’s doing to our 57 years together to have it end this way. 😓😥
We need to stay strong and pray for quicker journeys end so that we can find some peace for our loved one and ourselves....
Take care and sending hugs....Kathy
Thanks Kathy never a truer word spoken as much as we want them around we want to have some nice memories and they are getting worse by the day take care lovely lady and thank you xx
My daughter live 4 hrs . Away and came for three days to help....her advice to me is “Mom try to agree with him about everything and then just do what you need to do anyway and if it really makes you angry, leave the room for a bit “...she said getting angry hurts you more....
Keep on keeping on....sending hugs....Kathy
I handle it poorly. I get angry and even vent this toward my husband.
Then I calm down and apologize.
Thank you so do I especially when he is so negative and depressed my husband can’t walk or hardly do anything for himself now I’ve had 4 plus years of it I wish I could be like I was in the beginning but it just gets a bit much doesn’t it at least you’re honest thank you for that 💕
Handling it poorly is my middle name!!!!
Most of the time I good and feel so bad for him and can’t do enough to help him coup and other times I look at him and just want to slap him....a year and a half ago he admitted to an affair with our CFO, I think it was lengthy but know way of knowing the time frame....anyway our oldest son who worked with them confronted her, yes it was true, yes she was a complete narcissist about it, only concerned for herself and her reputation...I have not told her husband, perhaps someday I will....I have no way of know if the onset of this hideous disease is partially to blame??? That was the ONE thing I always said my husband would NEVER do 😢😢😩. Needless to say when I think of that I want to slap him....My life has taken such a horrible turn.....I want him back 😭
❤
Oh you poor darlin ‘ wow we’ve all got a different story to tell thank god for this site hey you are an amazing person bless you and hugs xx
The personality changes in my husband were the most challenging aspect of PSP. From a loving kind funny articulate man he became incredibly impulsive, he could become physically and verbally aggressive very quickly. It took me time to learn the trigger points and how to manage this new not improved husband. We found a Neuro Psychiatrist incredibly helpful . Antidepressants and counselling also helped a little but the biggest help came from anti psychotic medication. We then had short periods when he really was my husband. I wished he had started the anti psychotic medication years before but we were told it would make him
sleepy and apathetic - did not affect him at all in this way.
Would urge you to get him an appointment with a Neuro psychiatrist
Look after yourself - I saw a counsellor for years to help keep my sanity!!
Love Tippy
Thank you so much tippy for your honesty
My husband doesn’t respond well to medication he can hardly speak now so I don’t think it would help I struggle to get him to appointments because of his mobility so I don’t think that will happen maybe I should’ve in the early days looking back
I have had to do many appointments to try and help him including spinal surgery hip replacement and the last being both cataracts done over a year ago . On the follow up to the cataracts appointment which was yesterday I was told he had 20/20 vision by his surgeon and assistant
My husband told me it was bad and he couldn’t see prior to going to the appointment that particular surgery was 7 or 8 appointments all up the spinal surgery was 20 appointments I had to argue with a professor and several more professionals to get it done the hip replacement was similar no one wanted to touch him but he was in intense pain . I managed to get it done now he has no pain.
He also has endless urology appointments and endless UTI s
I don’t think I have much more to give
Your husband was so lucky to have you xx
You are his guardian angel....fighting for everything he has needed....may I ask if you used catheters for incontinence because he had so many UTIs....I’m trying to come to grips with this problem...Thank you for your post...
Keep on keeping on ...with hugs and admiration for your caregiving ❣️
Kathy
Hi Cathy yes he has catheters just for the purpose of his urethal stricture so monthly he goes to the hospital for this treatment and yes it probably is the cause of his UTI s
But what are the options a permanent Catheter will give him UTI a as well so what can we do my friend x
Hi Dance......I have come to terms, at this point, to use depends and pads plus extra waterproof bed protection to eliminate sheet changing and wash and change him as needed (4 to 6 x a day with extra padding in Depends at night) ...This has eliminated UTI s...he hasn’t needed any antibiotics since doing it this way....I know it’s a lot more work but it also keeps his skin in better condition by washing and drying and applying a moisture lotion....
Thank you for your response which has reinforced my thoughts..
Take care and big hugs....
Kathy
Thanks Kathy I use them too but my husband has a blockage so he has to have dialation regularly that means the catheter going in and out unfortunately there are risks of infection with it but I do t want him to have a permanent catheter
It’s all horrible isn’t it who would have thought we’d be doing this x
Hugs 💞
♥️♥️
My sister changed from a bubbly chatty person to someone who hardly said a word so so sad 💔
• in reply toTunupup
Could you please tell me more about your sisters symptoms, did she have any FTD as well, I'm finding the apathy the main problem with me
Tunupup• in reply to
Not sure about FTD but latterly she became more forgetful. Bless she sat in the chair eyes focused on the TV and no conversation. We could be chatting her husband and me eyes still focused on the TV totally unaware of what we were chatting about. She loved clothes and make-up and didn't care how she looked or dressed. From a beautiful person chatty always well dressed to a zombie. Very very upsetting for the family. Take carexxx
• in reply toTunupup
Sorry about your sister
Sounds like me .... I'm just a shell of the person I was (but very aware that I'm doing it, which I think makes it harder) .... I was a capable fun person, who would believe a disease could effect a person personality so much, it just turns everything opposite to how you were ?????
Tunupup• in reply to
That's right. My sister like myself had a really good job. We used to try and give her a boost but to no avail. I miss her so much xxx
• in reply toTunupup
Could I ask how old your sister was and when you knew something was wrong ...
Tunupup• in reply to
She was about 61. Kept falling and we all laughed about it. She became very depressed and inward until she fell down afew steps of the stairs and suffered mild concussion and the paramedic suggested we get her checked out at the Walton Centre and that's where she was diagnosed. Xx
Hi
Personality change was the first symptom that we could all look back to when we got the diagnosis for my mum. Previously a very protective mother of 5 she gradually became a stranger. Literally did not care anymore. Started to swear, became aggressive and angry. Started to take huge risks with her safety. Previously had a phobia regarding dentist and hadn’t visited for many years. Suddenly decided to go ad have dentures fitted! Impulsive buying of clothes. Also inability to work out basic maths and do basic tasks. It was a slow decline but all the symptoms were there and the diagnosis confirmed it. UTI’s amplified it all. Also started saying no when she meant yes and vice versus. Oh and having been with my late father all her life she even became interested in men! Totally not her but through it all there were slivers of my old mum. It was like she was trapped under rubble but still there underneath it all. Perhaps there are varying degrees of personality changes in each case? Take care x
Thank you so much sometimes we have to clarify that it is the Desease but at the end it’s how much we can take I suppose for now I’ll keep trying but not sure how long for
Hugs to you xxx
At the end of the day it is such a lot for one person. I think you should have help with this. Respite or daycare or carers to help. Many hands make light work and other people can bring different perspectives. Take care of you. X
Thank you I so get some help 3 half days a week but it’s never enough really is it xx
Is having him move to an assisted living facility possible at all? Or even respite care? You need a break!
Thanks I do get some respite care and having him move is definitely getting an option that I am considering more and more these days thank you take care xx💕
I’m where you about now....my adult children want nursing home but that’s not an option for me or one daughter....so at the family meeting we agreed to have in home help...I did give in and now have AM and PM personal care ...if he weren’t bed bound after his last fall, I can manage if he could only stand again as I have been doing...which would allow me to clean him due to complete incontinence......PT and OT come to the house and we are trying to get him to that point...you are right though...just how much can we take ????
I can only relate a little story to you based on our experience. Mary had not been able to speak for months and seemed totally "locked in". She looked as though she hated me. I sat with her, held her hand and asked her if she still liked me because I felt I was bullying her and lacking tolerance. After repeating this question and effort on her part she clearly said "I love you". Those were the last words she ever spoke so I knew that despite the best efforts of this disease she was still with me untill she died some months later. It is this love which gave me strength.
Yes it’s amazing isn’t it you must’ve been a great carer rob 😊
........ a lovely post, Rob, which just about sums up unconditional love and to have known such love is surely the greatest gift of all. xx
Tonight’s example:
Husband: watching the impeachment trial with the volume full blast. Captions running across the bottom of the screen.
SewBears: Honey, please turn the TV down a little bit so that I don’t feel like I’m being screamed at by all of the politicians. I’m trying to read my book.
Husband: Okay. I can’t find the thing.
SewBears: The remote control is in your hand.
Husband: Oh, he hands SewBears the remote.
SewBears: Adjusts the volume.
Husband: I can’t hear the TV.
SewBears: You’ve been snoring for 5 minutes and it’s time for you to go sleep.
Husband: But I was watching that!
SewBears: I know you were watching that but they will play the same video again tomorrow and you need your beauty rest.
Husband: But I’m not tired. Can I have the square?
SewBears: you want the iPad?
Husband: Yes, I want to watch it on the square since you won’t let me watch the TV.
SewBears: Honey, your snoring and you’re tired. Just close your eyes and after 5 minutes if you still want the IPad you can have it.
Husband: Okay, but you always tell me no!
SewBears: That’s probably true. Now please, close your eyes and see what happens.
Husband: Not even one minute, SNORE! Down for the night.
That’s how I deal 😱 My preschool hat is on full time.
OMG.....are you sure you’re not me....that’s exactly the scenario at our house ...the only difference is, my husband is now bed bound since his fall last week...take care and stay strong..our choices were taken away by PSP...
Sending hugs, Kathy
Hi Sawbears at least you’re getting spoken to
Mine just mouths the words occasionally forgets himself and says the odd word to me phew !!! 😆
Yes, it’s nice when he can find words and that I understand that a square is an iPad 😂
Before diagnosis I always thought that he was giving me the silent treatment, thinking he was mad at me. When that used to happen I would go out the door and walk around the block to get some air and vent to myself. Leaving him by himself to stare at the wall. I realized that something was wrong when I returned home and he hadn’t moved, still staring at the same spot looking into oblivion.
He will try to talk to me mostly when I ask him questions first. He doesn’t start a conversation on his own. If he does begin to talk I have no idea if it’s about the news, the dogs, how he’s feeling, etc. I love it when I get it right. Oh, how I miss him when he is right here! I know I’m fortunate to still have him around after so many people have posted about their loss. I cannot go down that rabbit hole without freaking out. So... I live in the now and appreciate his smile when I can catch a glimpse of it. Another way that I deal is to stay busy with craft projects. Keeps my mind occupied.
Keep on keeping on.
❤️ from I SewBears
You might consider getting your husband some wireless TV headphones. My hard-of-hearing cable news addicted dad uses them and they are a sanity preserver.
Hi Laurel54,
Yes, headsets are great! Last night I didn’t bother to put them on him though because I had a feeling that he was going to fade quickly. Physical therapy worked him hard and he missed his afternoon nap. Also, I can usually read when the programs that he watches are the same loops that he sees over and over again. Sometimes after he falls asleep I wear the headset to watch TV without waking him. Lol
This sounds like conversations I am my wife have almost every night. But she is the one with PSP and I am the one snoring
Hang in there, all of us! I get through every day by reminding myself that it is going to get a lot worse. So I can't wimp out yet. But I am blessed too. My wife has her angry moments, but the majority of time, she is sweeter to me than I deserve.
Warm Regards,
Dick
Hi all
I have been reading all this for months now and taking tips but for the first time after reading this and all the reply’s I feel I can speak. My partner was diagnosed with PSP about a year ago although we were not together, we had split up 8 years before it was a terrible time. We had been together for 8 yrs before the split . Anyway I heard through rumours that he was acting strange people saying he had dementia. It broke my heart all over again I contacted him and we met up not long after we got back together.
I am his full time carer but like you all say it’s the hardest seeing the change in his personality. He was always loud always had something to say life and soul of the party now hardly at all. He gets angry and hits out occasionally I know this is this is the illness but I don’t really know how I’m going to cope. He has seen a clinical psychologist but didn’t help at all. He won’t talk about anything that doesn’t interest him.
It’s sad because I do shout at him I get very frustrated and I have felt like slapping him many times this past year even wondering why I ever come back to him but I love him and hopefully that alone will get me through. Thanks for listening to me I needed that
So sorry to hear you are going through it too but at least we realise it is this horrible desease I think it’s worse than demetia as most people with dementia are happy and are Mobile this is something else and because it’s so rare we get no recognition people just say oh I never heard of it and mostly they look so good
What can we do ? I just wish there was some cure hopefully one day but too late for my husband and lots of others on this site
Take care of yourself x
It very well could be Dementia. Many of us patients have Executive Function Dementia. Included with problems in Organizing and Planning are also Self Control and Mood Swings.
Thankyou Dance1955 much appreciated x
Hi,
Before my husband's diagnosis which was late I was at a point in our life that made me wonder if it was worth trying to make things better.
He was so harsh in how he reacted to things. I received the horrible stare endlessly if I said anything he did not agree with. It seemed a constant battle.
Unfortunately he is no longer here and I have realised he couldn't help what was going on. I have sat so many times thinking if I had known the reason the horrid things said would not have been said.
He changed so much. Although it is just over 2 years since I lost him I constantly think "if only". I loved him so much but PSP got in the way and we argued. It is a vile disease that takes over. I will always love him and now live with so much regret for times I stayed angry. Somehow we had so much love for each other we managed to get through.
I can't advise you in any way other than to say try to get through. He is still the man you married and still loves you. He has no say when PSP takes over his thinking. This is so incredibly hard but you will get there.
Love and hugs
Pat x
Thank you Pat you are an amazing person to be so honest please don’t beat yourself up about the things that went on you are only human we all are I know I will have regrets but I am only the person that married a different man to who I have now it’s great that we all can be honest here because sometimes I feel like everyone is so patient and it’s just me
I’m sure you did a great job Looking after your husband
I hope you are ok and thanks x
I'm struggling. I want to say that I am fine as I usually do but not this week.
Hearing you are going through this horrible journey breaks my heart.
Try to stay strong you will find him again. At certain times in the day. He still loves you and although you are battling PSP your love for each other is still there.
Sending love and hugs to you both.
Pat xx
Pat thank you I’m so sorry how long did your journey last for ? Xx
Our journey was roughly 3 years from diagnosis.
Les dropped me back to work and rang me, in tears, saying don't look on the internet. His brother had spoken to him and told him he had roughly 7 years from diagnosis. To this day I have never looked it up.
We spoke when I got home that evening and said we would take one day at a time. It wasn't easy but worked for us.
I discovered this forum that same day and the support and help I have received is phenomenal. I hope you find this and know you will. Each and every person on here is amazing. You will be supported immensely just as I have.
It's a tough journey but you can weather the storms and treasure the quiet times. I will be thinking of you. Whatever you need there will be someone to help here.
I am sorry I seem to be rambling.
Your journey will be personal to you both.
Love and hugs
Pat xx
Hi Pat that’s terrible you didn’t have long from diagnosis I’m so sad for you but I wonder how long your husband had it before diagnosis
Sending hugs to you thank you for your strength and courage to help us all on here xx 💞
He was diagnosed with Parkinson's at first. It took me forever to persuade Les to go to the doctor.
It's hard to know exactly when it began but before his diagnosis was very difficult as we argued so much not realising that there was anything causing this change in mood.
PSP is a vile disease and having lost Les to it is hard.
Please don't think that this is how it will happen to you. Each journey is unique and PSP dictates.
Pat xx
Hi Pat we argued too for years he was doing stupid things in the car and moody please don’t think this was only you it’s happening to everyone but some people won’t admit it hugs 💕💕
Good morning
I forgot to say Les progressed more quickly. After surgery on his back he stood up straight for the first time without pain. That surgery was 9-9-2015.
I took him for a shower at the hospital and the first fall backwards occurred. After that there was no turning back. The diagnosis came soon after that.
In November 2017 he was in hospital after having aspiration pneumonia and I explained to the staff that I was going to get on the bed with him. The horror on their faces. I quickly explained that he needed a hug. It was allowed. To be honest Les needed me and they were not stopping me.
He was moved into a side ward on a Sunday and I moved in that day and barely left his side. On the Monday night as I was getting comfortable next to him in his hospital he grabbed my head and pulled me to his chest. That showed me that our love couldn't beat PSP but Les gave me one last hug. He died in my arms on the Wednesday afternoon. So no matter what, somewhere in the tangled mind caused by PSP, my husband was with me.
I guess no matter how horrid they become, when the time is right, for me any way, strength and clarity came back for a short time.
That didn't mean that losing him was any easier but I knew he was with me.
Pat xx
Hi Pat good on you doing what you wanted with Lea at the hospital I do too how dare they tell you not to get on the bed with him I bet they would if it was they’re husband oh you’ve been though a lot haven’t you thanks for being there for us all xxx💞💞💞
Talking to you has helped me so much so thank you.
I do feel lost as we were married almost 42 years and I felt cheated when he was taken at 62. PSP has no rules. I would hate to ask for him back with the disease. That's impossible I know but if we could skip the PSP years it would be wonderful.
Thank you so much for your help and I hope your journey is not so horrid. I know the desperation you are feeling.
Keep plodding as he is in there still.
Love and hugs
Pat xx
Pat, I really like your phrase of “you can weather the storms and treasure the quiet times”. It’s so true!
❤️
Thank you SewBears.
It's just about all we can do. I have missed Les so much this past week. I must be dehydrated from all the tears.
This is the most vile and evil disease and we can't fight it.
Les was so difficult at times it was impossible to explain things. Then I took him out in his wheelchair and kept stopping to hug him. On one occasion, before he struggled with speech, I was struggling with a painful back so he said I could sit in the chair and he would push me. This week for some reason these special moments pop into my head. I'd like to think it's him telling me it wasn't all bad. Who knows.
Hugs
Pat x
Hi Pat,
The universe can be strange that way. I always think of my mom and dad when a hummingbird stops by to say hello. I think that our loved ones are always with us after they’ve gone. My mom was a seamstress and I can feel her presence when I sew. I can hear her laugh at me when I put something together backwards, mostly because she always made fun of herself when she would goof up. I imagine you’re feeling a similar experience with Les. I’m not a religious person but I do believe that our hearts are all in the right place. We do the best that we can. Memories will help us to get through the next phase wherever that might take us.
❤️
Thank you SewBears
I wasn't very well a few weeks ago and was woken by "you'll be alright there mum". Les used to call me that as I called him dad. Just a silly game really, but I heard it so clearly.
It's 2 years now and although I have had grief counselling it still hurts so much. I will handle these feelings somehow. When PSP moves in you totally have no control. I don't think there is a time limit for grieving so I will plod on regardless.
I don't know how I would cope without the help of everyone in this forum.
Love and hugs
Pat xx
I don’t deal with it very well at all. I have best intentions most of the time, but I often leave after a blow-up wondering why I always remember it’s the disease, not my mother - after the fact.
I had hoped other caretakers could model healthy interactions for us (she is in a facility) but they haven’t managed much better than I. She has fired or kicked out anyone other than those who are there to change, move or feed her. I hired a lovely woman, (calm, patient - very Zen in her demeanor and approach), to massage and move her muscles; this woman truly wanted to help people live their best life possible. Mom told her not to come back unless she was able to help her walk again.
Mom had a major meltdown when the Chaplain from Hospice stopped by to say “hi”. The aides, nurses and many others I’ve observed over the past three years try to have as little to do with her as possible. I’ve had many calls from various professionals telling me that clearly mom doesn’t want them around - so respectfully, they honor her wishes.
I’m not a praying woman generally but I have asked the universe many a time for mom to have some sort of grace in this entire process - this is what I most want for her. Just yesterday I came to the conclusion (the same one I come to semi-regularly) that this is just not going to happen and that the best I can do is to simply remember it’s the disease and not her.
Hugs my dear friend xxx
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