Not sure I can cope anymore

Not sure I can cope anymore

Does anyone else's loved one with PSP verbally abuse and try to get physically abusive to you the carer ? I'm not sure how much more I can take from my mum ! I know what she says and does is not her but the PSP or the meds but she knows exactly what buttons to press for me to see red and shout at her then instantly feel guilty and it getting to be a daily occurrence.

Tonight she has grabbed my sleeve and said she wishes she could strangle me so she would be rid of me , told me to F off , that I'm a liar, i abuse my 2 children , tells me I'm poisoning her and that I tie her ups so she can't move .this is all in front of my 10 and 4 yr old

My mum refuses to eat and hardly drinks anything the nurses and Drs say i can only do what I'm doing and nothing else they can suggest as she refused peg and supplements .

I'm worried that we have CHC assessment next Monday and I haven't the strength or the energy to gen up on what's needed I have however been writing a sort of journal daily with what's been happening and what has been said , I just hope this will be what is needed - wish me luck !

I wish that we could go back to a happier place/time ( photo taken in July this year of mum , me and my boys ) as PSP is torture for the sufferer everyone that cares for and loves them.

Sophiejo :(

19 Replies

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  • Don't feel guilty. This is so hard for everyone. PSP does change their personalities and aggression does come out. Hopefully with your appointment, they can refer her to a home. I think it's time. Then you become the fun person who visits and not the one always prompting her to action. Good luck. Do not feel guilty. You have your little ones to think about. If this keeps on, they won't have happy grandma memories.

  • I like this reply, but will say that aggression isn't always a symptom.

  • Hi sophiejo,

    My dad has CBD..we are really beginning to see a difference in his personality. He shouts at us, gets so irate when all we do is try to help and i just take myself away for 5 minutes, remember the wonderful man he has always been and remember it's not him talking..its that horrific CBD.

    Its so hard, i know. try to take time out for yourself..

    all the best

    xxxx

  • Hi Sophiejo

    This seems to be common in PSP.

    The cared for person (Liz won't let me say suffering) quite often has 'nasty' behaviours particularly to those closest to them.

    Sometimes it is transient and as they deteriorate it changes.

    But you have to survive in the now. What you describe sounds unbearable. Remember it is the PSP talking, not your Mum.

    Be honest with the CHC... tell them how gruelling it is for you. They have seen it before and will understand, even though I know form personal experience it is a hard thing to say to others.

    I expect you are on the floor right now and would have to struggle to take more on.

    However if you can tell me whether it is a Checklist Assessment (The innitial assessment), or a Decision Support Assessment (the second) I can give you a quick guide as to how to make the best of it.

    Whichever, don't hold back, tell them how it is at the worst. Don't minimise.

    Can I say 'Hugs to you'?

    I am there and It is horrible.

    You are not alone.

    Warmly

    Kevin

  • Hi Kevin

    Thank you for your hug and your words of wisdom.

    Re CHC it's the decision support assessment , the dn who did the checklist advised me to write a diary/ journal of what goes on to support with the assessment (on the check list we had 3 A's 7B's &1C) it's been tough writing it down .

    Thanks again

    Sophiejo

  • Hi Sophiejo

    This might help.

    My apologies, I am assuming you are not aware of this.

    It is not rocket science. Just give yourself time and if necessary do it over a few short sessions.

    "Have a look at paragraph 31 on pages 14-15 of the DST for the ‘scores’ your relative ideally needs to achieve, and look at page 21 onwards for information on how the assessment is scored and the kinds of things that are assessed.

    Be sure, also, to read the section about ‘nature, intensity, complexity and unpredictability’ on page 49; note also: the words ‘single condition’ under Complexity; the words ‘in combination or alone’ in the short paragraph tha follows the bullet points; and the words ‘expected to change’ in the last but one paragraph.

    Tool Available Here

    gov.uk/government/publicati...

    Its a good idea to print this out and score it yourself before they arrive making notes in the box why you think that score is correct.

    It is completely acceptable to sit there with it in the interview. In fact most assessing teams find that helpful.

    I hope this helps a little.

    Please feel free to come back with any questions.

    All the best

    Kevin

  • Thank you Kevin

    I will attempt to read and complete asap

    Sophiejo

  • Just to underline it, you really ought to be able to consider finding a home for your mother. Your children need you and your mother needs more care than you can give her. Finding a place where she can be looked after properly is a very good outcome, nothing but a positive reflection on your care for her. You don't have to carry on to the point of collapse before you change direction. Best wishes. Good luck.

    P.s. Your boys look lovely!

  • Hi Sophie, I was comforted to read your post as I have the same issue with my mum who I care for & lives with me & my family. Mum has bitten me, pulled my hair, hit and mentally & verbally abused my husband & children. We have now started planning for her to go into a full time care facility & I think you should do the same. This abuse affects us everyday & all day especially the kids & creates problems within our marriage & is also upsetting for mum as well. PSP is the most horrible thing my family has ever had to cope with, good luck & thank you for your post, it made me feel a little better knowing that someone else is feeling how I am x

  • I'm in a dash for work but just wanted to let you know we are in a similar boat too. CHC assessment tomorrow so I can let you know what to expect? Ours is the first checklist but we are under enormous pressure too it really is gruelling.

  • So sorry for your problems. I was accused by my husband of adultery and he too was verbally and could be physically abusive.It breaks your heart when you are doing everything you can to help.Make sure you tell the CHC panel all the worst things don't feel you need to be loyal to your Mum it is a fight with PSP not her remember every horrible detail,when you get the extra help it could all be much better for you both.very best of luck.Px

  • Hello

    Just looking at your lovely children breaks my heart. My mum abused all of us and used to grab my little boy and it was just awful. As everyone has said it was intermittent. One day when i was visiting she had clarity and we had a lovely afternoon. I went to pick up my little boy from school and return to care home. It was a battle ground within that time and she pinned me up against door. This is not my mum, who was the most caring, loving mother and sacrificed her own needs for her five kids. You need to now stand back. I looked into getting 24 hour private home care to keep mum in her home. However, after some of her violent outbursts I knew it would be unfair to any carer to deal with mum on her own. Mum is now in a care home and we did get CHC after lots of trials and tribulations. Being in the care home she has a one to one carer but there is always help on hand. I personally do not think it can be done alone. Good luck with your CHC tell them everything. This is a rare disease with dangerous consequences health and safety wise. She needs the funding to keep her safe and alive.

    I know you want to do it all but she will be safe in a home and your kids will get some peace?

    Good luck. x

  • These stories of personality changes and violence have made me aware of how fortunate i have been. I am so sorry for you all having to deal with that. It's heartbreaking. My guy is still, 5 years post diagnosis, sweet and good natured and stoic and uncomplaining. I needed to be reminded of this as I was just very cranky with him, struggling to clean him and change the soiled bedding. What he has to tolerate from Me! Poor dear man.

  • Dear Sopiejo, my heart goes out to you. Its unbearably painful seeing your lovely mother like this.

    I am fortunate as, although my husband is often indifferent or silent, he is still loving and appreciative. It is sad for your little ones to witness this. Good luck tomorrow.

    Lots of love from Jean xx

  • I cannot imagine the pain you are all suffering, I am with EC, your children need their mom and your mom needs more care then you can offer. Putting her in a home does not mean the end, it mean the begining to a new chapter. You will be able to visit, even if it is for the day, you are not there to work.

    The anger is not a part of CBD, or at least not in our situation with my MIL, but the emotional tole it is taking on you is not good, for either of you.

    Hugs

    Paola

  • My husband"s personality has changed so much with PSP he becomes physicall and verbally aggressive incredibly quickly though I have over last few years learnt to puck up on warning signs. The impulsivity leads to huge frustration, I try to remind myself this is PSP not him. Since he has been going to day centre at the Hospice we have had a slight improvement and we have agreed a safety protocol, but some days are just awful. So really understand your frustrations. Our son was 15 the first time he saw his father hit me and found still finds this incredibly distressing. I organised counselling for him which helped him understand the personality change.

    Take care and good luck with CHC assessment I have just started to explore this.

    xxxxx

  • Oh my, sorry to hear you are going through all this, my husband was aggressive, at the beginning, had the most terrible few years before he was even diagnosed, it was awful. Now he does not really talk, some days he will not talk at all. With the CHC you must make them understand your worst days, which are more than likely everyday. Please let us know how you get on. Xxx.

  • Hi there I have just read your post. Please please make a note of everything mum says and does. My dad too becomes violent and swears etc it's awful, I have had bruises where he presses on my pressure points of my arms but I cannot let him go because he falls and am worried he will seriously hurt himself. My dad has CHC at the moment and is in a nursing home due to his needs (he also has terminal throat cancer)but we are awaiting the results of the latest meeting to see if they will continue with funding the care my dad obviously needs. Print off the form they will go through with you and write anything you feel necessary backs up your claim. Get anything you can from your dr and the nurses that have witnessed these outbursts in writing to again back up your claim. Ifmum is having hallucinations make sure you mention this to them.I can only stress enough to spend the time togo through the form as this is what they go on and also proof from yourself to show the times and dates the outbursts have taken place. They will try and challenge you on the terms you feel describe your mum most. Stand firm and back up your decision with examples. My daughter and I were in this meeting for over four hours our nursing home were horrified it took that long so try and be prepared. I wish you all the best at the meeting as it sounds like your mum needs this help. Sending lots of love xx

  • This is no way for your family to live. Although you love your mum, ask yourself, if she were not sick would she want anyone to treat you this way? The answer is no. Although it is the illness affecting her hurtful words and actions, these are real and deeply affecting you. It is time for you to have relief from this. So if possible you must let her be cared for by others now. There is no guilt in having done your best but protecting yourself and family from daily abuse is now your responsibility.

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