PSP Association
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Hopeless situation

Mum is getting worse with constant choking due to exsessive saliva. Mobility is pretty much non existent. Every time she stands up (aided) she ends up falling over. Her head is constantly back with a fixed upward gaze. I can't remember the last time she made eye contact with me😢 occasional incontinence. When she sleeps it is for longer periods but she is just so agitated all the time. Howling and crying constantly trying to move which is why she falls... can't tie her into the chair.. just don't know what to do anymore. 😢😢😢

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I sympathize. This is such a hard thing to witness, and we feel so helpless. Is she on anything for the agitation? Hugs and concern. Ec

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PSP stinks, I hate this illness it’s so unkind xxxxx

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Careen I'm so sorry you're/your mom is at this difficult stage :-(

I forget if you've shared whether your mom is on one of the drugs for reducing saliva?

And is she on an antidepressant or other mood help? Her agony and stress deserve to be alleviated, no matter what the care staff may say about "overmedication." We know there's nothing much we can do to help their physical trial - but at least the physicians/care staff should let us ensure some psychological calming during this struggle..... My opinion anyway.

Prayers for you xxx

Anne G.

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Also Careen, what does your care team say about the best place to station her given the constant falling and inability to sit up in a chair? Should she be in a hospital-type bed that can be raised as needed, has sides that can be raised/lowered and that bed positioned if possible in a "social" room i.e. not isolated in a bedroom?

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I agree with Anne G. (Raincitygirl)

Big hugs.

Luis

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A hospital bed is the safest place , i agree .

best wishes tony

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I am sorry, you are not alone.

We are at a complete loss as to what to do with dad. We know mom can not continue to physically or mentally care for dad on her own in the state he is in. We are working with a new doctor on adjusting his meds, hoping that will get his agitation, restlessness, insomnia, aggressiveness and howling under control. Hopefully we can get his meds adjusted to the point where we can get him into a long term care facility before something happens to mom. At the state he is in now, they will not take \ keep him.

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Hi Careenh

I see there are posts below which say what I might and more.

I would add, "If you are feeling this bad then you are not getting enough support. Simple.

You must get enough support to allow you to continue to function and feel O.K. otherwise the whole care thing will fold.

I have been there and I know how grim it is.

Please, if you can, get more help.

Warmly and sadly

Kevin

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Hallo, Careen,

I'm so, so sorry for your mum and for you. My mum also had PSP and I looked after her to the end. You cannot do this alone and your task now is to look after your mum AND yourself equally. If you get overwhelmed and ill you won't be able to look after your mum as you would wish. Get help from every source you possibly can to spread the load and keep yourself well. Doctors, district nurses, occupational therapists, physios, carers, family and friends - create the best support team you can. It's damn hard work to fight the systems but there are good clinical and care people out there, you just have to reject the duds and keep searching.

My heart goes out to you. Keep checking in on this board and don't feel you are alone. Amanda.

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How're you doing Careen?

You OK?

Warmly

Kevin

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