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PSP Association
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obsessive and verbally agressive

Hi,I am a newbie who is looking for help in dealing with my wife's symptoms .I struggle with her obsessive habits especially in regard to her medication regime.I have had to take control of all her pills as she is inclined to take them at any time that her brain dictates.She accuses me of not giving her the right pills which can lead on to a nasty row,screaming,crying,and telling me to leave.It all ends in an apology which I tell her to forget as it is the illness that dictates her mood.I sometimes have to shout back at her in frustration but I'm trying not to make matters worse.We have no family members to help out and because she has no appetite to socialise we only leave the house together to attend hospital and doctors appointments.We attend support groups but only when it suits her.Our lives have changed completely and with no back up it leaves me feeling pretty down most of the time.I would like to hear from others that understand the situation.

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Hello acorneater. Obsession and aggression are understood here! It will help if you say which country and area you are in so that folk in your country can respond to you.

I am from New Zealand and my husband had CBD. You sound in need of help and support immediately, so I have responded so you know we are here to help you!

Be assured someone who fully understands and has probably been where you are will respond to you soon. This is a very supportive website! So hang in there! Help and support is not far away!

Hugs

Jen xxx

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Thanks Jen,

I live in East Anglia (U.K.) but it would be great to hear from good people like yourself who have been down the same road and ended up coping better.

Best Wishes,acorneater

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Hi acorneater

Welcome to the site but I’m sorry you had cause to join. As Jen said, you need support and also contact with others. I see you sometimes go to a support group. Is it a PSP group? When next you go, could you see if there are others you could contact between groups. At the support group I attended with my late husband, there were other members of this group there and we sometimes met together at other times and still do! (I’ve been to China with one and am going to Morocco with another next month). I gave details of this group and several joined. It was good to be able to phone folk who knew what we were going through. In the U.K. there are agencies that arrange sitters. I had sitters 8 hours a week for 3 years so I could go out, start new hobbies etc so when my darling left me, I had a good support group round me, many I didn’t know before PSP. I needed something other than PSP. My husband objected to sitters originally but I told him I couldn’t cope if I didn’t have time out and I’d promised him I’d keep him at home as long as I was physically and mentally able to do so. He got the message and very soon I would come home and he would be laughing with the sitter.

You will get many replies from folk who are still going through what you are and hope you find someone not too far away.

XxxX

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Agree with NanaB you need to get people in to help you out, my husband had PSP, he passed away recently, I use to have short breaks, careers coming in, you need some time to yourself to be able to do your caring role. Get help as soon as possible. Yvonne xxx

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Hi Yvonne,

Thanks for your reply,Don't know exactly where I'm going with all the good advice I've been getting.I need to establish what she will tolerate without losing her temper.I might ask her G.P. if there is something she can take that will calm her down.

Take care,Acorneater

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Thanks NannaB,

So many people have replied to me,have not had time to read them all, but are getting round to it.We should be going to the next support meeting on the last Saturday in Feb and I'm quite sure there will be a lot of interest in this forum.

Thanks again,Acorneater.

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Welcome. I find writing here is very helpful to vent. Everyone here knows what it is like to deal with this behavior. It is maddening.

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Exactly,if there any tips to deal with our problems,all will gratefully accepted.

Cheers mate,Acorneater.

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Hi Acornearter,

I do agree with everyone... support will help you greatly. A carer will benifit you both in the long run. I hope someone in you area reaches out to you soon.

It is good you realize it is the PSP being ugly to you & not your wife.

Sending you & your wife gentle hugs... Granni B

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Thanks Mottsie,

Because of my wife's speech problem she is reluctant to speak to others sometimes.She has almost given up using the phone because people don't understand what she is trying to say and often results in confusion.

Many thanks once again,Acorneater.

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Hi Acorneater,

I can relate to your wife's reluctance to speak with others. Mom was the same. It is a difficult time for both of you. I always tried to put myself in my mom's shoes & wonder how l would handle her circumstances. And the answer was always the same, 'l would absolutely HATE it' ! That always helped me 'keep on keeping on'. Mom's 'hateful PSP words' had me in tears often but l never let her see them. We just muddled through the puddles as best we could. My heart is with you both.

Sending you & your wife hugs... Granni B

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Thanks Mottsie,for your kind words and understanding,Acorneater.

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Hi acorneater

I can only add to what others have said you need help even if it's just a few hours a week you need that break.

I hope that by being honest and offloading how your feeling here will have helped you to know that your not alone and that we all care about you.

Love to you and your wife and hope that you get some help with your caring role soon.

Lynda 😊

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Oh! dollydott,I am overwhelmed by all the replies,

We live in a rural village so there is always travelling to be done to lead our lives the best we can.I am not sure what road to go down in regard to help.I look after everything in the house,excluding the ironing which I send out.I am always kept busy to the extent that I don't think too much about getting away from it all.I nip out sometimes to grab a cuppa with neighbours but never for too long as I'm questioned on how long i'm going for.

Thanks again dollydot, Acorneater

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Welcome Acorneater sorry you have had to join us.

My hubby has PSP and with it significant personality changes. Antidepressants helped a little as did speaking to a counsellor. More recently he started on anti psychotic medication this has also been quite helpful . Sadly the fixating/obsessing tendency is quite common in PSP. The good news is that eventually every stage passes and the obsessions move on.

Do keep on posting and checking in there is so much knowledge on this site it wil become a great resource for you.

Love Tippy

PS please take some time for yourself even a walk , coffee with a friend a little breathing space helps xx

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Thanks Tippyleaf,I am finally talking to people,without my wife being present,who have the same problems.I get out everyday with the dog which gives me time to think and plan,and as I have said to others,neighbours sympathise.

Thanks again Tippyleaf,Acorneater.

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Have you shared this with her neurologist? Perhaps her anger is due to depression?

Can you leave the house for daily respite?

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Hi rriddle,

We are back at the hospital next month for her latest assessment,and I have a form to fill in regarding her changes since our last visit.It's difficult to have a conversation alone with the neurologist but I am hoping he will pick everything up from the form.I can leave the house for short spells but am always aware that I have to be back to provide her meals and medication.She is on antidepressants but I'm not sure if they work and neither is she.

Thanks a lot,Acorneater.

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Hi,

We went through a similar phase. I found that having his medication in a weekly pill organizer worked for us. I placed his pills in an AM slot for morning and a PM slot for nighttime. When my husband said it was time for his medication we would look to see if he had already taken it or not. This helped to rule out arguing. I was going to give him placebos next, but the pill organizer did the trick.

Breathe

Smile

Hug each other

Breathe

Xoxo

SewBears

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Hi SewBears,

I have a similar system but she questions it on a daily basis and I constantly assure her that I know what I am doing.Her medication has been tinkered with by her G.P. over the last 12 months and I think this adds to her confusion.

Many thanks,Acorneater.

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We substituted different names of each drug and came up with some silly stuff. Clonazepam became clip-pity-clop. We got a good laugh out of that one. I tried to make it a game.

You might try listing the name of each drug and the time to take it on a whiteboard. You could set alarms for the right times? Then, let your wife cross the names off of the board after she’s taken the pill(s). It might make her feel like she has some control? Just some of my random thoughts...

Xoxo SewBears

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Thanks SewBears,

Good advice but at the moment it would be too much for her.Her daily routine is to get up in the morning,come down stairs,sit in her HSL chair,and watch t.v. until bedtime normally 8 p.m.That's when I'm off duty and can relax.If I can just get her to feel a little calmer on a regular basis it would be a step in the right direction.

Thanks again,Acorneater.

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Hi acorneater,

I fisrt visited this site after my husband was diagnosed coming up to a year ago. People here have been amazingly supportive, kind, informative and witty!

I, too, live in a very isolated position...a mountainside in southern Spain! No neighbours in view, closest village 7 mins in the car.

My husband is rarely able to leave the house now, only on a good day, so it can be difficult at times.

Have you thought about journaling? Writing either your story, or hers, to stimulate thinking and conversation? It could be good for the both of you, remembering better times. Just an idea.

Remember that you are not alone. Folk here are always good listeners.

Juliet.

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Hi Juliet,many thanks for your reply.This site is incredible for speaking with like people,I will certainly bear in mind your advice and will pass it on to her support group.

Take care,Acorneater.

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Hi Acorneater

How about getting your local chemist to put the pills in a blister pack, then when the blister is empty, you both know the pills have been taken. My Mum does still question sometimes, normally she thinks she's taken something when she hasn't but she tends to accept the logic of the blister pack. Sometimes logic just doesn't work & subterfuge takes over, pretending to give another pill (Mum takes them in rice pudding, so giving a spoon of rice pudding will sometimes make her think she's taken a pill).

Various charities offer sitters/buddies, my Mum has a lovely gentleman from Independent Age visit her once a week, normally they offer support over the phone but because Mum can't use the phone any longer - difficulty holding it in the right place as well as quiet, indistinct speech, he comes to see her. I stayed with them the first time to make sure he understood her condition a little bit and that Mum was comfortable with him and now she looks forward to his visits. He is the person who is interested in Mum as a person, not in her as a PSP sufferer, & it's made a big difference to her. Think Red Cross & Age UK offer similar support. Your local Social Services may have a local area co-ordinator for charities offering this in your area and also details of lunch clubs, day centres etc. Have you been in touch with your local Hospice, they often have day centres and also carer support groups.

Keep in touch, so we know how you are doing.

AJK

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Hi AJK2001,

Sounds as though things have improved for you,good luck.Because we live out of town our doctors dispense her medication and to be honest it's as much as they can do to have her medication available for when she is running out.We have been visiting the hospice for about a year now off and on.She did a course for people with neurology problems involving sufferers and carers and she has had two lots of feel good therapy .During this time I have been speaking with a welfare worker at the hospice.She is a very nice caring person and a good listener but she has not really pointed me in the direction that I feel I need to go.Being part of this forum I think is right for me.

Many thanks,Acorneater.

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I think you are right about being a part of this forum being a good place. So many folks sharing what has or hasn't worked for them.

Do any of your neighbors come to your home for a cup of coffee or tea & a visit? It might be little break in your day & even if your wife doesn't speak during the visit she might enjoy listening. Just a thought...

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Hi Mottsie,

We live in a small village that has no focal point so unless you go out walking with the dog or just by yourself you can become isolated.Our next door neighbours are great and think the world of both of us but have busy working lives which means we might not see them for a week or so especially this time of year.There is someone round the corner who has similar problems as myself but she comes round sometimes with a bunch of flowers and will stay for a coffee which my wife appreciates.They catch up on what's happening locally although it can get confusing for my wife after a while.

Thank you so much for taking an interest in our plight,also I have passed on to our p.s.p. group just how helpful this forum is.

Bye for now,Acorneater.

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Good Morning Acorneater,

It is nice your neighbor brings flowers when she can. I am guessing short visits are best for your wife... Mom always tired after long visits & did not enjoy large groups.

Support group was not available to mom or if it was we never heard about it. So Glad you have one to attend when your wife feels up to going.

Do you mind my asking what country you live in? I am in lllinois USA.

Sending hugs to you both... Granni B

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Hi Granie B

We live in East Anglia in the U.k.I am surprised there is no group support in your large city.My wife would appear to be like your Mother,but there are places to go to.There are two Parkinsons groups within 30 minute drives from us that offer exercise classes for people with limited body movement and they lay on tea and cake for suffers and carers.That's fine but we have not met anyone else there with p.s.p.The p.s,p. group is over a one hour drive to get there which can be a bit much for her but I am in regular contact with the organiser whose mother is aiso a sufferer.It's always a pleasure to hear from you,take care,Acorneater.

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I am glad you found this supportive site. Exercise class sounds excellent for your wife. Many on this site believe in 'Use It or Loss It', as l do.

I have heard of a new PSP group in a near by state but l am not in need of it at this time. I greatly admire the organizers taking on this mission. My mom passed & l am here to learn & be of a support in any way l can.

I am 70 & getting ready to attend my first Chair Yoga class today & it has started snowing again... it's pretty but ugh... l am ready for spring!

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70 is no age these days as long as you have your health.Most of our friends and including us are in the same age group.We have all enjoyed travelling and look back at the good times that made us laugh.Keep on getting out there and doing stuff,you can have a million pounds in the bank but it's nothing without your health.No snow here just wetness and mud,I shall be going for a slip and slide with the dog once it gets light.Take care,Acorneater.

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My husband tends to be really obcessisive about various things...one day it might be bananas of all things, he wants me to go to the store immediately and get some, or it might be he wants his glasses and he is wearing them but wants another pair, then he looks for lip balm constantly and I don’t know where he puts it because I keep getting more and it disappears.....

Thankfully he is not at all verbally abusive. We have zero social things with our friends, that has waned because I think most of them are uncomfortable....it is interesting that we have had an explosion in our lives and as the dust settles I am amazed and who I see standing with us and the ones I thought would be there aren’t....so sad.

You can read some of my posts to more clearly understand my struggles with this, it’s a cruel and unfair thing to have a loved one go through, mine is struggle with my husband has added complexity.....

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Hi,thanks for your story,It seems we are both struggling with the same problems.It is good to hear from people like myself.Before my wife was diagnosed I started to see small changes that made no sense and could not be explained.When she was finally diagnosed everything became clear but now I'm sorry to say she is not the person I married and has become unrecognisable to our friends who have known us for many years.They phone me to ask how she is but of course ,she is on a slow downward spiral,

.But we married them for better or worse,Acorneater

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Dear acorneater. Welcome to the site that no one wants to be on but which will give you more help and advice than anyone else can. It is rather like becoming part of a big international family. Scrolling down the responses that you have had there is little more I can offer. My husband has CBD. I just noted your comment about your wife not being the person you married and thought that you might like to read the poem I posted 8 days ago under Result of thinking about CHC funding assessment. It was written as a result of my having to focus on all the negative things which did me no good at all. All the best and good luck with the things that you are finding difficult. Love AliBee xx

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Thanks for your kind words,

Good luck and take care,Acorneater.

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What is really sad about my husbands attitude, he actually shows me more love and sweetness than he EVER did when he was well!!! From the very beginning of our marriage our lives were all about him...he at times was indifferent and rude to me, real cocky with a giant ego! Practically the only thing we ever argued about was his lack of love toward me. The last twelve years or so we were more like roommates than husband and wife...I was unaware he was having an ongoing affair for many years. It’s sad, he let me know just after Thanksgiving he told me what he had been doing, something I truly believed he would never do, her being married the whole time as well, she was his closest associate at his office....but now he is in fear of his relationship with God and wanted to make it right....now that she is out of his reach and I am caring for him wonderfully he suddenly sees me the one he married and loved! He is constantly telling me he loves me, he is sorry and blowing me kisses! Do I think it’s just because I am his only option....perhaps, but we both realize the wasted time.

She was informed we knew, she admitted, then on a phone call to my oldest son who worked with them, she said “I should have lied”. What a peach....

What did she get out of all that NOTHING! She cheated on her husband for years and he is still with me, I am taking good care of him and we are closer than ever realizing that neither of us showed each other the love we should have, he is so sorry for not loving me for years as he should have.....

My problem now is I am racked with anxiety attacks, I have begun taking Zoloft because I can not manage this.....I will get to a place soon I am sure that those attacks are less and less and then gone...It’s like I have PTSD, I am so traumatized by everything....

I pray you and your wife can get to a happier place......

What was your wife’s personality like before she was sick?

Xoxo

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I can't even imagine what your going through,being a carer is bad enough but with everything else going on , your life is hell.You need close family and friends round you to share all the problems.Can you get respite help?Perhaps getting away for a while and opening up to professionals may help you through this and get away from medication which will probably be the best in the long run.

Get help,take care,and chin up,Acorneater.

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Hi acorneater yes we’re all here I am in Australia but originally from UK we have a good support system here and I can get up to 8 weeks a year respite in a nursing home for my husband you know we all have to recharge our batteries it is a horrible disease and the worst thing is the personality change. I did notice that you said your wife is on antidepressants I do t thin they worked for my husband either and when he was diagnosed the neurologist stated that he could try Parkinson meds but it doesn’t seem to work that makes me wonder if anything does? Howrver I have heard some good reports about

Cannabus oil Spose to work wonders for moods and after all it is a natural substance no side effects probably

Anyway welcome

To the group and I feel for you wish that someone could find a cure for this nasty desease

Get all the help you can try and get as much time out as you can you need to recharge your batteries good luck with everything you’ll find out who really are your friends now take care of youself

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Thanks for your kind words,I am truly amazed by the wonderful messages people are sending me.I totally agree with you about drugs that don't seem to work but because my wife thinks she can't live without them it is difficult to cut down.My neighbour kept suggesting cannabis oil so I had a word with her doctor who said they would do no harm but would not comment further.I have spoken to the doctor regarding her stress and to see if there is anything she can take to calm herself down.I'm always looking to try anything that will help.

Bye for now,Acorneater.

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