Nursechel

[Nursechel]

Hi

I have posted before . My mum has dementia and PSP . She is practically bed bound and in a care home . It’s about 5 years since her diagnosis . She is very agitated and talks incoherently . She looks and sounds like she is permanently tormented . She is always pulling at her clothes , sheets etc . The nurse gives her diazepam when she is very bad , but she is also on trazadone . She has started to bring her knees up to her chest and I have been told by the swallowing team that her swallow is deteriorating . Is there anyone in here who has a loved one with PSP and dementia ?

[LuisRodicioRodicio]

Hi Nursechel!

In our case, our PSP patient did not suffer these types of episodes. I offer you some comments from other members of this chat that may be useful to you:

Joluu wrote: “Episodes of confusion and hallucinations have been triggered by infections so my first thoughts are to get him checked by a doctor to make sure there's no infection.”

“easterncedar” tells us: “This disease affects everyone differently. For some people there is a strong element of dementia, and for others it is all physical. It depends on where the brain damage is centered. Personality changes can be a symptom of the disease. It’s hard to separate. Counseling and antidepressants may be worth considering”.

People with PSP are affected by changes to their thinking which become more apparent as the disease progresses. There are currently no licensed treatments to help with these cognitive problems. A study (2021-07-16) based on MRI by doctors Rittman and Whiteside from the Cambridge Center for Parkinson-plus indicates that PSP patients have less flexible and less efficient brain activity than normal, the more severely the disease affects them. The changes in activity affect not only functions related to the areas most affected by PSP but also affect the entire brain, even when the examination or "tau" pathology appears to be normal.

"Mazarion" reports: I’m afraid it’s PSP as same with my patient with her also saying very inappropriate things and lifting her clothing. Eventually she was put on some medication to help her behaviour.

“daddyt” suggest: An appointment with a neuropsychiatrist is definitely to be considered.

Hug and luck.

Luis

[messier]

I’m so sorry to hear about your mother’s situation. It is possible that the dementia is related to the PSP although of course it is entirely possible that someone has the double whammy of PSP and Alzheimer’s at the same time. The difficult there is getting both diseases recognised and cared for. If she recognises you does talking to her about memories from the past help and give her a focus. Can she look at photos? Or does music help? Might it help to put something in her hands like a soft toy to keep her hands occupied?

[Nursechel in reply to messier]

Hi , they say she has 2 types of dementia as well as PSP . She doesn’t recognise me or my Dad , there are very rare moments of lucidity . She is utterly bedbound and has her eyes closed a lot and is asleep . They say the PSP will be the more dominant in her demise . But the whole thing is soul destroying to watch x

[messier in reply to Nursechel]

Have you involved the community palliative care team? I pushed to get them involved in my mum's care home and they were really helpful and prescribed stronger pain relief and muscle relaxants that made a big difference towards the end of my mum's life.

[Blacklabmum]

I’m so sorry to read about your mum, my husband has familial frontal temporal dementia and CBD. He is immobile and has swallowing difficulties, he draws his legs up at night, he does have alien limb syndrome on the left but possibly now on the right as we are 5 years into our journey. One possibility is that your mum is having muscle contractions which I know happens with CBD, I’m not sure about PSP. If this is the case she probably needs to be assessed for pain control. Good luck, I hope this helps xx

[Nursechel in reply to Blacklabmum]

Hi , I haven’t heard of this alienlimb syndrome before . She does have paracetamol every day with her other medication . She draws her legs up a lot of the time and I have been told they will remain up and her elbows will bend and her fists will rest on her shoulders and then her neck will go rigid . All of it sounds horrific . X

[sammy90210]

i am so sorry to hear this - does she have the things from her old room in the new place? plz try and bring her things over like some picture frames, wall hangings, bed sheets etc - anything that would make it familiar for her - the disease affects every patient differently unfortunately - please try and visit her often, if possible and have her surrounded by things and people she knows and trusts.... that might reduce her agitation

if her swallowing is not good, doctors may suggest putting in a feeding tube (PEG tube) - it it seems like her quality of life is not that good so in case a doctor suggests I would not say it's a good idea - my dad had one at a later stage when he lost most of his capabilities and we feel like it prolonged his suffering - it's a difficult decision and other people have different views - when the time comes, please do search for "PEG" in this forum

[Nursechel in reply to sammy90210]

Thanks Sammy , she rarely opens her eyes now so doesn’t really look at her surroundings , although I have hung some of her paintings in her room that she did herself . She spends a lot of the time asleep or in a state of agitation and random mumbling that I’m told she does not realise she is doing . She no longer knows me or my Dad . Very , very rarely is there a moment of lucidity . We have already said we won’t do a PEG . X

[sammy90210 in reply to Nursechel]

I saw some videos on communications with dementia patients - Teepa Snow is an authority on the subject - please see this - youtube.com/watch?v=ziOWyOh...(Not working as expected?)

I would recommend checking her whole body for signs of bruises or any other injury, also please try and press different parts of her body to see if any part feels painful - she won't be able to tell you...

other than that, please check if she doesn't have constipation or a UTI - both can cause delirium and pain as well and patients sometimes get afflicated by either

Lots of prayers for your mother and your family