Late diagnosis

Hello everyone our nan has been in a nursing home for a number of years now she was admitted for fear of her safety at home due to falls, she has been severely disabled and unable to walk for a number of years as a result of broken bones through the falls. My auntie has long suspected PSP and it has never been considered, we finally managed to get an appointment with a neurologist a few weeks back who assessed nan and reported that PSP seemed the most likely diagnosis. Reading through everyone’s posts I am now in no doubt that this cruel disease is what has claimed our lovely nan. Her falls were often backwards, we put changes in her personality down to grief of losing Grandad, she would often close her eyes whilst we were in conversation with her which we put down to depression, her left hand is completely bent up in a permanent fist, she no longer has any interest in TV, she has been struggling to eat for a while now and is on a stage 2 thickened diet, she point blank refused a PEG. The most heartbreaking thing is the struggle to communicate, it’s clear that nan is still very aware of what is going on and it’s devastating to sit trying to understand her.....in the last few days she seems to have deteriorated further, she can now barely open her mouth at all and the nursing staff are worried when feeding her as her swallowing has become such a struggle they fear she’ll choke. I suppose I’m wondering if people who have experienced the later stages of this monster can pass on any wisdom? The medical professionals are talking of communication tools and CHC assessments however from reading everyone’s posts I feel we’re almost at the end before we’ve fully grasped what we’re dealing with 😢

[raincitygirl]

Dear Onefineday;

Welcome to this site - although I'm so sorry you have reason to search us out.

There are far more experienced members than I who will respond to you (our European and UK members are in the middle of the night now) but I never like to see a new member sitting out there without a response!

From everything you've described it certainly sounds like your Nan has PSP.

One of the most uncertain things that is discussed so often here is "when is it the end? How can you tell?" It seems that once a patient refuses food and water the end is near: a few weeks for some, less for others. You may well be perceiving your Nan's true situation. If so, then please just spend any time you can with her giving her love and comfort. Tell her what she has meant to you in your life, and how glad you were that she was your nan. Others will be stressing over doing this technical things and doing that and trying to prolong an impossible situation for even longer. That's understandable, but I wonder if they miss out on meaningful moments with such an important person, who may just want to "go home".

Let us know how it's going. Hugs to you for this hard time.

Anne G.

[mrsbeenk]

I agree with raincitygirl - and want to add that reading to her is a wonderful way to pass the time. It is often difficult to find the time for such things, but since she understands but cannot reply, is not interested in television, reading things you know she delights in can bring such moments of joy. A C.S. Lewis novel, poetry, short stories, funny anecdotes (Reader's Digest is a great resource for this), Psalms or other Bible passages that can bring hope and comfort are all uplifting ideas for reading. Play music or audio books when you cannot be there. My mother was able to stay at home as my father found help and cared diligently for her to the end, so even though I work in a long-term care facility, I'm not sure what all your limitations might be - but have a care conference with the staff and make arrangements for comfort cares, Hospice-type services or whatever you are allowed. Her deterioration makes it clear that unnecessary measures to prolong her life would be undesired, perhaps even cruel. My mom communicated by raising one finger for yes and 2 for no until within a couple weeks of her death - this is helpful for understanding her desires and discomforts. Make sure she is getting good oral care. Sing. Blessings to you and your family as you go through this difficult but natural time!

[honjen43]

Hello Onefineday, agree with Anne G, your nan could well be in or close to end stage. It will depend on her, and on the wiles of PSP.

If you have trouble communicating with your nan, it may be good to take up the medics idea of a communications tool so that you can try to give her a voice to explain how she feels, and whether there is anything she is anxious to convey.

It may simply be a need to see that you will all be ok if she leaves you. If she has good mental capacity, she may understand what stage she is in, and want to make sure you are all aware.

Give her cuddles and show it doesn't matter that you can't converse with her, but that you love her and won't leave her.

A recent post talked of the death of their loved one, and how they had gathered around the bed and talked of what their loved one had contributed to their lives, and generally filled the room with happiness, joy and laughter.

You may still have many weeks at this stage, or some sudden event such as aspiration or viral pneumonia might hasten an end.

She sounds like a strong fine lady! She deserves a fine, loving and peaceful end!

An increasing number of us here understand what you are going through at this moment. We will all be here to support you and your family.

Big hugs

Jen xxx

[Hidden]

Thankyou everyone for you kind words, my mum has been in today to discuss an end of life care plan, nans wishes are to stay where she is with familiar faces caring for her until the end ( she’s been in the same care facility for a good couple of years now) I’ve just got back from a visit, she seems a lot brighter today and has managed to eat almost all of her dinner ☺️ I’ve read a bit of the news to her and we’ve had a bit of a chat (well I mostly talked at her) about what type of aids we can use to communicate so I’m just off now to get supplies to make flash cards ♥️ thankyou so much again xx

[claredavieswales]

So sorry to read your post, but thank you too. Some good advice given which I will also implement asap. Your post could've been written about my mother-in-law. Almost word for word and at the same stage. I feel what you're going through.

We've just had a 2 day episode in hospital with aspiration. Thought it was the end. So sad. But, she's back in the nursing home now and doing ok. Ish.

We will up our game and chatter even more about loved ones, past events, news stories and anything & everything.

Thanks again for posting. Keep strong during this difficult and emotional time xx

[raincitygirl]

A further comment: If you are interested in gaining more insight into signs that the end is near, there is a link to a Youtube presentation by a Hospice nurse, Barbara Karnes, on the Brain Support Network website. I forget the title (though Dying is in it). It was interesting.

There is also a historic string on this website (use the search PSP window) "Signs that the end is Near" by Ketchupman, I think.

Anne G.