Every time I have visited my lovely she has been very grumpy (read truculent and hostile). She was never a grumpy person and in the past could sweet love a frenzied tiger into purring at her feet. Myself too.
We have a system of language based on a squeeze of the hand for yes.
It is so horribly weird asking why I have upset her. Is it because of this? Or that? Or what I said yesterday? No defenses I have to ask until I get it right.
Yesterday I said 'enough'. I come here every day, find out what elements of care need resolving. Deal with them. Give you nice things to drink and chocolate on demand. Sit for at least an hour reading a novel to you and a whole lot more. And you give me Mrs angry. We need to sort this out. I won't come here for abuse every day.
So today we reviewed her thoughts.
She told me that PSP made her angry. She could not help it, but that I need to accept it as part of her condition.
Well my lovely gets 100% for insight and "M'lud, I just lot my case."
Maybe tomorrow I will get one of those precious smiles.
PSP!!!
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Kevin_1
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Before finishing reading I was going to say I bet it’s the Psp making Liz angry! And who could blame her?! No one!! It’s a rotten bag of shit our loved ones have been dealt!! Hugs to you both x
She seems to be telling me that to quite a degree she feels out of control. In other words the anger is a brain thing from the PSP. Rather than a reasonable angry response to PSP.
We had this when she was at home. She would suddenly get some insight and say that she could not understand why she did whatever it was.
It makes little difference.
She has plenty to be angry about anyway with PSP.
I will stick with it, remember our love and stand with her.
Bless her. It is just so unbearable how they have to suffer. No wonder they become angry. I'm glad Liz was able to relay that to you though.
mum is very irritable now and so depressed and behaviours that are hard to deal with and then we swing to extremes of laughter for no reason in milliseconds.
Neurologist not so helpful in telling me this phase could last a couple more years or could end next month. It is an unknown......
I've been reading about Liz's moods for some time and it always makes me grateful that - so far - Jon is very even tempered and easy going. It makes the whole damn situation very much easier to live with. You who are not so lucky have my great sympathy. Bless you all for your endurance.
Yes, Liz has some elements of CBD. That is the basal area is affected too. She shows the classic CBD symptoms of one side of her body being affected more that the other. I suspect that is the cause of these moods.
Then on the next day she is a delight.
I'm posting about this, partly, because I know there are other folk here who are struggling with grumpy spouses.
Its not nice when the one you love get's like this and it makes love and care very hard at times. Its not easy to say publicly and so I think its good to get it up front and heard for what it is.
I did see you refer to psp/cbd in another post and wondered if Liz's dx was shifting. As if the physical sacrifice isnt heartbreaking enough!! Hubby (cbd) sometimes gets angry at something & when I ask, he says he doesnt know why he said, shouted, waved his arms etc. I dont know which disability, the physical or the mental, bothers me most. They are both heartbreaking, they are both unfair, our loved ones never deserved this. What did Amanda say somewhere? "bag of sh_tty horror"..?? I would think my hubby and your Liz would feel like burning something down....
..Speaking of which, did you see 3 Billboards? (the movie). That fire bombing scene felt VERY satisfying!!😈
When we changed neurologists we already had a diagnosis.
The new neurologist ran a battery of tests to find out exactly was happening.
He finished off by saying something along the lines of, 'So its PSP and a slight development of CBD." By this time Liz and I had read quite a bit and we were dreading CBD as a diagnosis. I guess we didn't allow ourselves to hear the CBD bit.
So much so that I was perplexed about Liz's periods of hostility. Even more perplexing was that she could not see that she was being hostile and said I was imagining it. One day she suddenly got insight and said, 'yes that was very hostile. Where did it come from?' She was genuinely perplexed by it.
The odd thing was that she was not like that with other people.
I'm writing about it now because I was not believed - the clinicians poo pooed it and put it down to carer stress.
Everyone was most surprised when she went into the nursing home and was so hostile the first nursing home could not cope with her.
It was so not her personality.
She is more settled now in this new home. However she still has days where she is grumpy and intransigent.
There is no reasoning with her.
For three years I got up each morning not knowing whether I would be assailed all day, or in odd extreme cases whether she would telephone the Police to complain. It was like living under threat.
Its not written about so much here. So I thought it really important to write about it. My thinking is caring for PSP is tough and heartbreaking. However facing this sort of thing from a person you love deeply is not only deeply painful. but almost sort of embarrassing on top?
I hope you are having better days at the moment.
Yes, 3 Billboards is on my films to watch. I shall think of you when the Fire bomber scene comes on.
No - Its just like some brain injuries. It is not so unusual for folk with certain types of head injuries to become aggressive if those area of the brain are damaged.
Our emotions are driven by the limbic system. If PSP is affecting a part of the brain which is involved in emotional response then the brain might generate anger.
I have read a number of clinical research papers on CBD and they refer to this kind of personality change. They describe the parts of the brain causing the problem, but they don't go into any detail of how it exhibits in the real world other than irritability. One commented that far more work needed to be done in this area.
And then as other posters have pointed out. There are good reasons, with these illnesses to be angry as well.
For me it is important because it helps me recognize that this is the illness and not the way she would have it.
Whenever I think PSP or CBD is bad I remind myself of Pick's disease. That is a different sort of plaque forming on the basal ganglia.
I once had a patient, a mild and pleasant person, who turned up in a smart suit driving a BMW.
By a quirk of fate when I was working in another part of the country some eight years later I was asked to assess a guy in a nursing home. It was him. The sexual inappropriateness and rage level anger was so sad to see.
Believe it or not there are worse things than PSP in this area.
Yes, CBD is considered one of the FTD - FrontoTemporal Diseases, so the part of the brain that governs impulse control, executive planning and other behaviours may be impacted. I guess it's different with each patient depending on where the wretched tau proteins are doing their over-growing and folding thing!
Kevin, I'm glad Liz is in care and under professional supervision (..not that your supervision would be "un" professional - compared to most!!..) I can put my shoulder to the wheel when it comes to physical care, or sorting through garbled speech, or filling in for the increasing gaps in ability - but I'll be at a loss if hubby's personality becomes "abnormal" (sorry, there's probably a better description but I've got 4am brain myself at the moment) I guess it helps to know one's limitations and FTD dementia will probably be mine.
There's no end of heartbreak with these diseases. Kevin, you are doing an amazing job: in your love and care for Liz and, as many recognize on this site, in your clear and patient gift of communication to members here. You are valued!
Sadly the 'professional supervision' is not so great. I am forever explaining how to communicate with her as her condition changes and that she does have capacity and is not an infant and so, 'please do not go 'poochy poochy poo' to her, or some such rubbish. Currently I am trying to sort out her medication because the G.P. changed it without consulting the Urologist and the homes take is to run with whatever meds. a doctor says.
However it has taken the unending daily care with added 'issues' off my hands. On a good day now we can just enjoy each others company. We do have quite a few good days.
Thanks for the good words too. I need to hear that sometimes.
A big hug to you, Kevin, for being so persistent and wise and caring. I think you are amazing with Liz, and I am very grateful that, with all you are going through, you are still so practical and helpful and sympathetic with everyone here.
When I think of loosing Liz - even think of it - The bottom falls out of my world.
I cannot even begin to imagine your suffering.
Here is a silly thing. I have lost a few folk in my time. So every time there is a full moon I sit under it and bathe in the light shining out of the dark night sky.
I remember the ones I love and ask them to be in my heart. Then I light a candle to burn through the night. In a window, so they know where their home is. ( An old sailor tradition when boats are late into port or missing).
They are always with me. Living in my heart and my memories until I join them.
Well that is my way.
I do hope you have a way of keeping Henry close to you.
I believe they are not gone... merely off stage (Shakespeare).
However it goes any day the truth of your relationship holds. I regret the times I was irritable etc with Chris and he would regret the times he was difficult with me. But it changed nothing between us because we both knew the strength of our relationship. Words are not needed - although welcome - when a couple have weathered storms together.
Make the best of your precious time together. You know in your heart that you are truly together.
Unfortunately , I think extreme anger is not an unreasonable response. I am angry because I can’t leave the house, /he can’t leave the chair. I am upset that he does not communicate, / he is living trapped with his own thoughts and fears. I can’t imagine what it is to see us doing things alone that they used to do with us.
It’s great that you were able to understand the difficultly Liz is having. That is so important for both of you. Dan is often not able to convey his thoughts or feelings.
Thanks for taking the time to share your thoughts with us,💜
Yes I agree, it is expected and wholly not unreasonable. The difference between the two types of anger though is one is a reactive anger and the other is one caused directly by the PSP. The second kind is 'observable' when the person later says I really don't know where that came from. I don't feel like that.
So in Lizzie's case this anger, when it occurs is quite a personality change.
She sounds like an incredible lady. It must be hard to see the changes this terrible disease has caused. It has stolen this women right from you. I find it amazing that she still has the insight to realize this is NOT her, and that her anger is caused directly by the disease.
I did not mean to be harsh. My heart just bleeds when dealing with the devastation this disease causes.
As you know , I struggle with what Dan understands and feels. I think it might actually be easier if I felt he was no longer “in there” or that his personality and feelings were now different.
I worry that he is sad and scared and cannot tell us .
Liz is fortunate to have you to love you and advocate for her. I’m sure she knows that. 😊
Your understanding the dynamics of this disease and willingness to share with us is a blessing.
She seems to get more lucid times when, if I ask her about her previous behavior she says that she can't understand it.
She used to refer to it as 'bad Lizzie' and more than once she would say she was frightened because 'bad Lizzie' was trying to take over.
Liz is getting close to loosing the ability to hand squeeze now. Then I will, from time to time re-assure her that I will follow her DNR and LPA to the letter and talk about dying and the painlessness of it for her. I might just slip in one or two of my thin beliefs in case she needs them... Her's are even thinner.
One of her Sister visited yesterday. She is a tough seen it all professorial working in Child Protection. She was in tears afterwards. You can never be quite strong enough with this illness.
Kevin, I am honestly uncertain has to Dan’s ability to communicate vs his will to put forth the effort needed. We recently took him to the hospital emergency room where he was diagnosed with influenza . He had not said more then 10 word in 3 days, yet told the hospital staff his name and birthdate. When he got home that evening, he answered several questions with a yes or head nod. Since seeing that, I do all I can to encourage a response from him. It is sometimes a one word answer, or a very very slight head nod. It may take me several pushes to get any response. I explain that I would like him to have some control and in order for that to happen, he must respond. That said, he still says only a few words each day. I recently asked him to say Happy Birthday to our granddaughter, and he did. He also struggles finding words .
We have not had a real conversation in over a year. We were never able to discuss his wishes or even the diagnosis . His attention is not good and he seems to withdraw when he is feeling uncomfortable .
I have tried had gestures, up and down for yes etc,. He seemed confused and it never works. Squeezeing of the hand is hard too. Each time I tell him to squeeze for something , he just keeps squeezing , I get frustrated . It seems best to make decisions for him.
Sometimes I wonder if he is just feeling hopeless. We have a physical therapist coming twice a week and he tries hard to pay attention to her. Other times, especially when he’s tired, he looks at me with a blank stare and his mouth open as if there no cognitive awareness.
I did consider a picture board, but I don’t think it will work for him .
Liz, too would stop signalling with hand squeezes an then suddenly resume squeezing my hand if a carer came in and asked her something. I think a lot of that was her not feeling too tired, too much effort.
Yes, I suspect hopelessness plays a big part.
When she squeezes I often have to tell her to un-squeeze before asking the next question. Would that work for Dan?
Liz is having so much difficulty doing anything to signal now. If she gets really stuck we try blinking - even that's hard for her now.
We are getting the staring vacant look more too now.
However Liz has been able to communicate her wish for a medication change and that she wanted me to find her Aunts ring and give it to her Sister and she does enjoy the book I am reading to her.
It is so hard to know where she is at and I guess you are saying the same about Dan.
My Dad too, even the nurse at the home he's in said she felt sorry for me the other day, she knows how I long to visit my dad & sit cheerily, chatting & laughing instead of struggling constantly time after time. I know I can walk away & my Dad can't but it is so darn hard at the moment.
One of the issues identified is fear of helplessness (vulnerability) and fear of death.
So my tack is to reassure about love and caring and to ask, every day what issues are concerning my lovely and then to promise to address them, with updates.
On death: I re-assure about the painlessness (most likely pneumonia - merciful and painless release) and talk to her about her beliefs and support her whatever gives her comfort.
My hubby is apathetic most of the time but has his moments of anger and frustration which always seems to be aimed at me, and during those moments it's very difficult to be rational but I know it's this horrid PSP making him like that and in fact I am now pretty sure it was actually his first symptom, well before the physical symptoms as he became very "unfair" and unsympathetic. When we met 13 years ago, he wasn't like that at all, he was very caring and would help other people but that changed a few years ago.
A friend of mines hubby has a brain tumour and he too has become very abusive. He had treatment and the tumour regressed a bit and he was much nicer to her but it is obviously progressing again and he is changing. It must be the part of the brain affected that is causing these changes.
It is so sad and frustrating not being able to do anything to help them get better.
Thank you for bringing this up Kevin. The personality changes I really do feel are overlooked by Neurologists. This is the hardest part of PSP for us. Early on Neurologist discussed FT dementia and Dementia with Lewy Body. But since that time it has been ignored. The only person vaguely interested or who acknowledges this is the Neuro Psychiatrist. I have to be so careful when I raise concerns in front of my husband as he saysI am trying to ‘belittle ‘him.
Quite frequently he will stop speaking to me for days ( the record being 3 days!) for some perceived insult. Though he refuses to ever tell me what I have done wrong he just says I should know!! I have become so used to these silent days now - almost routine!! A very painful part of this ghastly disease.
May we all find the strength to continue to be patient and loving in the face of these enormous challenges!
Yes, I read a couple of papers which said that more work needed to be done. Also the NHS and the PSP Assoc. merely refer to irritability. It is so much more than passing irritability!
And it seems to be a feature that it is directed at the one closest. When Liz went into the nursing home she directed it at the staff and not I.
We had that problem too. Liz and I used to see all clinicians together. In hindsight I should have written to them and asked for a pone call consult. Having said that there is no treatment other than sedation - Which neither of us would want.
Liz would get ideas into her head, often on waking and then be quietly hostile all day. Sometimes I would get to the bottom of it and find that she thought I had done something I hadn't and if I asked for the where and when she would look confused. The other part of it is that she would be very fixed in her 'mood' and no amount of care, hugs would help.
You sound like you are coping with it very well. But, I expect its still tough.
Thank you Kevin for both your response to my post but also for being so brave in sharing and supporting all of us whilst you have your own pain. I have found it so helpful/ reassuring reading so many responses to your initial post - all of us struggling with our journeys wanting to give the very best Love care and support we can realising we all do our best but struggle at times.
Kevin , how sad for you .You're wife is angry , who could blame her? You come in , give chocolates and maybe read for an hour.You leave, duty done , but she is trapped there by her body , and thoughts .What ever hurt feelings you have is understandable , but she is in a special hell.Angry wife has lost everything , yet you scold her and threaten not to visit. I have no idea how long y'all have been in this terrible situation and I'm sorry you get your feeling hurt by a dying woman.Maybe you can fake it for the hour you visit.BTW , my husband has PBP and it's rough some day's. He can't talk and has a feeding tube .I cant imagine ever wanting to hurt him ,or scold him.Before the flaming starts , I'm just putting myself in her shoe's, your not the victim here.You get to go home and live your life.Everyone here likes you and admires you., you must be doing something right .I guess it just shocked me that you want pity and kudos for doing what many care givers do themselves daily , 24 / 7.
If nothing else please re-read the first three posts of the thread.
I absolutely do not scold her nor threaten not to visit in the way you imply. And I certainly do not come here for pity or kudos. You imply I would want to hurt her? Where on earth did you get that horrible idea? We have always been honest and direct with each other, even now and it grounds her. It helps her keep perspective. All of the time I am fighting to keep her in a loving space where she feels safe and cherished.
Also, I do a heck of a lot more than an hour or so chocolate and reading each day. My whole life is wrapped around meeting her needs. I wouldn't have it any other way.
I did 24/7 for many years before we reached this stage and know how tough that is. Your loved one in care merely takes some of the hard practical work off you and you get better sleep. There is so much to be done to give a quality of life.
All of that having been said:
What I have been trying to do here is to unpack the ftd personality changes rather than seeing someone who is only understandably angry because of a dire illness and situation. Though that applies too.
The point raised by myself and some others is that this is so often not explained to carers and often it is not understood or addressed by the professionals giving support. I took it as an understandably reasonable reaction for a few years. It was only when I started seeing it for what it was, a personality shift, that I was able to help her manage it better and to work with it more effectively as a carer needing to keep our love going and to do care despite it.
I posted on this for two reasons. First to share my feelings and experiences in a forum where there is seldom blame or judgment, but where people first seek to understand and secondly to talk to others how they manage it and their issues. Thus we share knowledge and experience and give each other support.
So often when faced with these behaviours it is the carer who is seen as the one with the issues rather than it being something to be understood and managed. And the carer needs support to cope with it too, rather than being blamed for struggling.
If you read the thread, and my posts you may see that there is quite a bit of sharing aimed at understanding what is happening and how we each try to manage this very difficult thing.
This thread has enabled some of us who struggle with this to discus a very difficult area.
An area which seems not to get aired and is barely mentioned in most of the information articles for both carers and professionals.
I for one have found it uncomfortable to write about the way someone I love deeply at times becomes fixedly hostile to both myself and sometimes the staff.
I do owe you an apology , reread your post, guess I was having a really bad day myself.When you described you're situation it scared me.We are just 6 month's into the DX , and am just afraid of what the future holds .Jim has progressive bulbar palsy, we spent two year's seeing DR's. I'm so sorry for my post , and for you and your wife having to live with this beast.I guess maybe I thought I was seeing the future.
Thanks for your understanding and apology. Your openness and maturity do you great credit.
You will not be the first or the last of us to post here when distressed and then find we were mis-footed. I have done that. I think once I managed to get both feet in my mouth and face palmed with both hands at the same time. Who needs yoga when you can do that?
I perhaps need to be more mindful when I post.
I think I owe you an apology too. Sometimes I forget what it was like at the beginning, how frightened I was, how little I knew and the utter desolation inside as I tried to adjust to something I knew so little about, but that it would devastate us.
The good news, I think, is that given my brief reading, non of these FTD type symptoms will come your way. Having said that I can see that progressive bulbar palsy is a horrible illness in its own way.
My heart goes out to you both.
I'm sure you would be welcome here. Just start a new thread and introduce yourself. Most of the clinical discussion would not be of help, but a big part of it all is knowing where to get advice and how to mange the progressive care changes and how to survive as a carer.
Having said that I see there is the MND Association who support and help folk with PBP as well. It being one form of MND.
Thank you Kevin , I really appreciate your kindness. I am going to check the site out.I am scared all the time.. You are a very kind man I really regret my first post to you
Hi Benny, I welcome you to our site. It's the first time I have seen you name, so forgive me, if you have been posting for a while.
My husband has finished his journey with PSP, although I can still remember the terror I first felt when I found this wonderful page. It would never be me in that situation of not coping, screaming at my husband, because he had not got to the toilet in time, for the 10th time that day. Because he had rejected something I was doing for him, although I was totally exhausted, I still tried to do something nice. I am sorry, but we all do it. unfortunately so will you! Please don't think for one minute I am lecturing you, judging you or pulling you up on your comments. These evil illnesses that our partners have, effect both parties. We are just as much victims of their diseases as they are. Just like our loved ones are not responsible for their actions, unfortunately, at times, neither are we!
That's what is so wonderful about this site. We all come on here, rant and rave, kick and scream, knowing somebody will be feeling exactly the same. This is an extremely safe environment to express that anger. My husband was saved no end of my stressy fits, because i had somewhere to express myself, to people who understand.
When you are in the depths of caring, sometimes it's hard to know what is the illness or them being a human being. By sharing that moment, it helps get your mind in the right place. None of us like this anger or the guilt that follows, but again, it's part and parcel of these evil illnesses.
My husband once said to me, "I know I am having a good day, because you shout at me!" It's call normality and from what I learnt over the years, that's the best gift you can give someone in our husband's position.
This site saved my sanity. Helped me become a reasonable carer. The love and support is overwhelming. PLEASE, PLEASE don't think I am censoring you, just telling you, I understand where you are coming from. We are in this together, with help from everyone on this site, I got through, so will you. We share the good, the bad and ugly. I hope you will as well. I promise, you will only get benefit and feel the love and support from us all.
Thanks Kevin. Almost a month since his funeral. I still can't take it in and when it hits me I weep. Glad for him that he is out of the ravages of PSP though, but I do miss him. X
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Stages of psp
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