Decline

[Walking18]

Mum has had all oral meds/fluids/nutrition stopped since last Friday, swallow tests showed she had lost her swallowing reflex altogether and was aspirating further

We have made the decision for her to remain at the care home with myself and sister going in each day to spend time with her

She has a long line in her arm for any medication and is getting frequent mouth care and staff are using a bubble machine so she experiences taste without having to swallow.

I fear the end isn’t too far ahead her face is becoming more and more drawn, eyes hollow but still moving.

Once anticipatory meds are being used I’ve been told they will put a syringe driver in to keep her comfortable.

I’ve not long lost my father in law and now facing life without my mum, I lost dad in 2020 just feels like I’m loosing everyone around me 😢

[pmcdonough1]

I am sorry you and your mum are on this journey. Sending you blessings of peace and comfort.

[Walking18 in reply to pmcdonough1]

Thank you for your kind words

[Willowden]

Thinking of you and your mum at this hard time. Xxx

[Walking18 in reply to Willowden]

Thank you 🥲

[Kelmisty]

Such a difficult journey for all. I hope she passes peacefully. X

[Walking18 in reply to Kelmisty]

Thank you so much I’m hoping she does too that at least will make things marginally easier

[Rose1sunflower]

I’m so sorry you are going through this now and on top of your recent losses. Thinking of you.

[Walking18 in reply to Rose1sunflower]

Thank you so much for taking the time to reply I really do value the replies and heartfelt comments of this group

[Leosta]

This is such a difficult situation for you and your sister and I feel for you. But it must be even more difficult for your mum as she surely knows what is happening. Be strong for her and tell her that if she's had enough of this PSP rubbish and wants to leave it behind then she can, if she wants. Sometimes all they need is permission to go.I'm sure other carers with loved ones suffering from PSP had a lump in their throats, as I did, reading your post, knowing one day we will be in this situation too.

Sending you blessings for comfort and strength. 🙏

[Walking18 in reply to Leosta]

Thank you so much for your kind reply, we are taking the time to spend with mum as her condition deteriorates, comforting her, letting her know we are there with her.

The only thing that preys on my mind is does she feel hungry/thirsty and think we are starving her? If her mind is still able to comprehend will she think we have just taken them away? We have talked to her about her choking and just hopes she knows everything we are doing is out of love

[Leosta in reply to Walking18]

I'm sure your Mum doesn't think you're starving her. Please don't think that.My husband is not yet at this stage and can still eat, though he has started to have difficulties with certain foods.

At times he will say he's not hungry or thirsty, even though he surely should be. I ask if he's sure and he says he is.

So maybe these feelings of not needing sustenance are intensified towards the end. Maybe the brain, which has closed down so many bodily functions, is no longer sending messages to the stomach. I don't know for sure obviously, just would like to think that's the case.

You've done and are doing all you can for your Mum. She knows that, I'm sure, and she knows you love her.

Take care of yourself xx

[Walking18 in reply to Leosta]

Thank you kindly for your lovely reply which has been very reassuring - it’s a hard journey but this group has helped enormously

[daddyt]

Hugs and prayers.

Tim

[Walking18 in reply to daddyt]

Thank you so very kind

[Bergenser]

I'm so sorry to hear you and your family are going through this. I lost my mother two weeks ago and even when (or especially when) it expected, it's not easy to let go of those we care about. I don't pray but you are in my thoughts and if good wishes have any power, you have them. Allow yourself to feel all the emotions. Someone told me when you are sad, you become more open for receiving comfort and love and I believe this is true.

[Walking18 in reply to Bergenser]

Thank you so much your reply is very much appreciated and so sorry for your loss.

Like you mentioned I have known this was coming for a long time seeing her decline but to be told by the community matron still came as a shock

So thankful for the support of this community