PSP Association
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Tough time coping with cognition

HI,

I've not posted here before so I'll briefly introduce myself. Skip to the third paragraph for my actual issue I could do with advice on.

My mum - who moved in with us about a year ago due to her health - has a 'query diagnosis' of PSP. Her consultant is being very cagey about committing to a diagnosis, but all her other healthcare staff refer to her as having PSP, so we're expecting a confirmed diagnosis next time we see the consultant.

I'm very worried about Mum's cognition. She has this phrase 'don't worry about it' which basically means there's something to worry about, but she's very secretive. I think she's trying to cover up for 'mistakes'. For example, this morning I was trying to bake cookies with her, and she randomly tipped some sprinkles (supposed to go on top when they're iced) into the mixture, then said 'don't worry about it'. I don't know if that was just a random impulse she had, or she thought it was the spice, or what, but it was very odd. My daughter was also there and I told her she wasn't allowed to eat any of the dough until the end - but then Mum picked some and ate some herself, saying 'I'm allowed because I'm a grownup', which was obviously very frustrating, but also very out of character - she's always been very strict on setting good examples for kids.

I think she's acting out because she feels like she's being treated like a child. The problem is that she's in such denial about her condition that we have to take some decisions out of her hand - eg she's very bad at assessing risk. I have tried again and again to sit and talk to her like a peer about it, but she either clams up, or changes the subject. Again, it's like she's trying to hide something. Probably that her condition is worsening. The irony is that we *know* it's worsening, and if she could talk openly about it, we wouldn't have to treat her 'like a child' so much at all.

I think she's really not processing things well, but when she had a MoCA test for cognition, it came back fine. I know there's something wrong there, but when the official test says otherwise, what am I supposed to do?

Secondly, does anyone have any advice on coping with this kind of passive anger and 'acting out'? I'm trying to make her feel loved but I feel like things I do - like the baking today - make her feel like a child because she can't do them like she used to. But the alternative is to not do stuff with her!

It's causing her so much distress, and she won't even acknowledge that, and it makes me so sad. Any advice greatly appreciated.

Thanks,

Lizzie

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My son, 55 years old, died of PSP on May 4, 2017. I have posted that I wish I had kissed him more, been more patient, been kinder, and asked myself, "HOW IMPORTANT were his annoyances and challenges?"

Jan, 2017, the Neuro told my son he had 3-5 years ahead, but he didn't. I think each day (especially with PSP) should be taken as precious. Yes, you will need more patience than Job.

PSP is a brain disorder, listed among PRIME OF LIFE BRAIN DISEASES. Who knows what your mom knows or doesn't' know? Believe me, looking back, as the disease progresses, this and other incidents will seem so minor.

I realize that I am no longer caring for a PSP loved one and that at best PSP can try all our patience, but I share with you, "my looking back".

Best to you....................

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You must remember that she will feel like a burden as parents look after children, not the other way round. She has lost her independence, although for loving reasons, this is very hard to accept. All you can do is love, support and laugh with her.

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One of the first signs of PSP was my husbands apathy. He had always been meticulous about bills and appointments and over a short period of time he started letting the bills pile up on his desk. Our son has put all of our accounts on autopay and we realize now two years later that he just didn’t care about details any longer. Also he was very impulsive and telephone sales people could talk him into any item they were trying to sell.

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Gosh your dealing with so, so much!

The diagnosis will help only insofar as the Consultant will tell her to her face. If he is doing his job well he will tell her, describe the illness a little and tell her again at least one more time to allow her to hear. He should also give her the opportunity to ask questions and give answers to common q's. I say this because you say she is in denial and the research is that delivering the diagnosis once is seldom heard.

However as long as she is accepting practices which protect her from risks she perhaps does not need to be made to accept her, apparently growing, deficits.

Anyone who is not angry at suffering this sort of thing is not real.

If she can see your grief at her plight she might step forward out of denial a little. So perhaps it is for you to be emotionally up front to allow her to start doing the same? You may have already done this, or you might have a family culture where this is 'not the done thing' . Its only a thought.

It is a distressing illness.

I do hope this helps a little.

Warmly

Kevin

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Thanks Kevin, that does help. That's good to know re the research on diagnosis - I think we've been hoping she might face up to things more when given a firm diagnosis, it's useful, if depressing, to know that might not happen.

I think you've put your finger on the accepting risk intervention - she is really only accepting it where it's being effectively forced upon her, meaning we're in the position of either letting her continue with something risky, which doesn't seem to fulfill the duty of care, or making her do stuff, which makes her angry and sad. We have to make a judgement call each time - eg she's still eating foods that SALT have recommended she doesn't eat, and choking a lot, but I figure with the direction things are heading in then if she wants to eat something she can still enjoy then fine. On the other hand, we're having to limit her use of her powerchair a bit more forcefully because there have been some near misses of someone being badly injured.

That's good advice re letting her see that I'm sad, as long as I can get her to understand what makes me sad - if she interprets it at just that I'm sad at her condition then she'll go back and try and hide things more, whereas what I'm upset at is that she feels the need to hide things.

I do think culture and generation do play into it a lot - she had a very strict upbringing where showing emotion was not done, she brought me up somewhat less strictly, but now we are raising my daughter very differently again. Some of this is relatively small stuff that would happen with different generations living together regardless of anything else, but some isn't - the example of baking was just the latest, but a couple of weeks ago she had a faecal incontinence episode and tried to clean it up herself, which when she has poor mobility and is rapidly losing her eyesight is just worrying in so many ways.

I guess what I want to do is try and break down some of the walls she's putting up so that when, for example, she has totally lost her eyesight, she trusts me more. Whereas I think she is aware she is losing abilities and so is trying to hold onto them.

Thanks though, lots to think about x

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You sound like you have a lot of deep understanding. There is very little that is predictable with PSP / CBD and so forth. One thing you can most likely expect is a form of confabulation. Many folk try to hide their deficits by giving plausible explanations. This makes it difficult when trying to asses how much she understands about what you might explain to her because the ability to process chains of ideas can diminish markedly as does memory.

" We have to make a judgement call each time" Is all we can do.

She is fortunate to have you and its not at all easy.

Be well

Warmly

Kevin

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I’m afraid risk taking is very much part of PSP. My husband constantly does things which I know are going to lead to falls but he says that he doesn’t appreciate the danger until it’s actuslly happened. Part of this is impulsive behaviour which is another a characteristic of this vile disease. Xx

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She sounds angry - there is nothing to worry about with sprinkles in the dough!!!!! Why would she want to talk to you when you are disrespecting her by treating her like a child???!!! Unless she IS your child you needn't treat her like a child. Poor woman. Dough should be eaten all through the fun process not just at the end!?!?!?!

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The point is not that she put sprinkles in or ate dough. I feel like I maybe picked on a bad example. The point is that she is acting impulsively and out of character and then trying to cover it up. I'm not treating her like a child other than the fact that I sometimes have to make judgement calls on her behalf where she's putting herself at risk.

This was a random example based on something that happened to have happened that day. (My daughter was licking dough then putting it back, which is a risk when Mum is so vulnerable to chest infections, so I had to instate a rule for her that she couldn't do it at all - Mum was then taunting her with it, which is out of character for her.)

Stuff like this is happening every day and I'm trying so many different ways to try and talk to her about it and try and avoid treating her like a child, and I thought people on this board with experience of what it's like to have/care for people with PSP might have some useful advice on how to engage her in talking about these things, exactly so I don't have to treat her like a child. Some people on this thread have been incredibly useful that way - even knowing that this is part of the condition and sometimes there really is nothing to be done is really helpful to me.

I'm disabled myself (I discovered yesterday that the doctors have officially given up on trying to cure me and I have to live in a great deal of pain) and am a live-in carer for my Mum as well as trying to raise a three year old, and it's hard. I don't care about sprinkles in dough. I do care that my Mum hides things from me and tries to cover things up (some much more serious than this example; mostly I don't even know what she's hiding).

I understand I may have chosen a bad example or phrased things badly but I really want a way to communicate with my mother before she loses the power of speech/cognition, and didn't expect to be judged so harshly for that.

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I know it seems deliberate action on your mom hiding and covering things up, however if this was not her personality before than just attribute it to the disease not to her. My mom suffers with psp (we are approaching the end and only found out the diagnosis 3 months ago) and it often seemed like she was lying however it was her brain "damage" from the disease. I work with fasd/aard kids and they suffer a form of brain damage and I see similarities in impulse and other behaviours. Remember she can't help it. Let her have joy and control in the small things now as eventually there will be none. It is a tough disease. My mom is ready to die and we are ready to let her go. We will miss her she was an amazing mom. She is going to a better place, she has run the race, she has kept the course.

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I found there were many occasions when I felt I was pushed into being " parental" with my husband. It makes it hard, especially when it is so different to the relationship before PSP

I think its like the impulsive behaviour and is part of the brain changes. My husband could only say " I don't know why ". Eventually I realised it just had to be accepted. Its more important to make the best of the precious time whilst she can still communicate.

You have a lot on your plate I can see. Your mum must find it frightening to not understand her own behaviour and its terrible for you. You sound as if you are doing really well.

Love from Jean x

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Hi Lizzie,

I just discovered this site a few months ago and it has become a very useful resource in our journey. My sister is in the final stage of Psp-Cbd. and is struggling to swallow.

My sister knew before everyone else that she was having movement problems. She even went to a neurologist to get a mri to see if she had had a stroke.

Reading on this site should help you with your questions. Not many people have been down this path and everyone here has had the same thoughts at some point in the disease. So at least you know that what you are going through is “normal” .

You will see that everyone reacts in a different way as they see this disease for the first time.

Gradually we have had to take over the burden of my sisters body as she can’t do things. You will learn how your mom reacts to your knowing her weaknesses. It might help her if you focus on her strengths. Make sure you spend more time talking about what she does well. Like maybe make a joke about how her cookies are better than you can make even with sprinkles in them. Just think about what works best in your relationship.

The jokes work best with my sister. Everyone is different. We tried not to let her see our concern as she took that as judgement and would cry.

Good luck to you. Make some good memories now.

Best,

Amy

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We just had another medical consult for my husband . They showed us at PET scan of his brain and explained that PSP often effects the frontal lobes of the brain which control executive thinking and impulse control. The lack of impulse control is what may cause them to do things that are dangerous, embarrassing to family members etc. This part of the brain also controls inhibitions which can cause some to do or say things very “unlike them”. I know this does not help your situation. Maybe as she is more comfortable in your home and accepts her situation , things will get better. Bless you for taking care of her. We all know it is not an easy task.

I

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My love had CBD which is similar (but different!) from PSP. He cut open a resealable cereal bag on the bottom. I lost my rag! He stopped doing things for me around the kitchen. Then when he decided to empty the dishwasher, I saw him start to refill it before the clean dishes were all put away. This time I was calm and he told me he had lost where he had got to, and then walked away.

I think it was around that point that we both accepted that something was wrong and both became more accepting of mistakes and inabilities. Result was that I stopped being angry at mistakes and he stopped hiding his mistakes, and we both understood there was a real reason.

When he was mobile he would go to the shop on his walk and buy toffees and then hide them in his drawer! Not good for him when he was diabetic, but was one of the few enjoyments left in his life. When I caught him eating one, I joked about it, and he did not scoff them all at once!

There are few joys in life when you have a life ending illness! The longer it goes on for, the more important the little enjoyments matter, and if they were bad for you, it was not a big deal any more!

Even medications are removed sometimes as they are no longer of benefit as there is no longer "a long run".

Making dough is always good fun, with or without sprinkles, but I agree you needed to tell your daughter not to lick and put back! I used to let participants have a bit of the raw stuff - maybe a smaller bit for those who lick!

Take a deep breath and re-evaluate the behaviour and importance of your loved ones! - and try and keep calm!

Love and hugs

Jen xxx

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