My poor mum...: So mum is still hanging in... - PSP Association

PSP Association

9,256 members11,355 posts

My poor mum...

MRSYafffle profile image
16 Replies

So mum is still hanging in there, I'm not sure how exactly and it is hard to watch but must be so much worse for her.

We have no communication, not a word from her. Plenty of tears.

I just buy her plants and flowers as she loved her garden.

She is beyond frail, a bmi of 14.9, she is 6 stone 9 lb and just skin and bone.

She cannot be left alone as forgets she's ill and tries to reach or get up and is a real falls risk.

I am preparing for the whats next as her ability to swallow has almost gone and she's choking anything at all. Last week could manage a rich yogurt but not even 2 spoons yesterday.

She looks so exhausted.

I have asked them for a talk about preparing myself as I feel it's malnutrition that will sadly take her. If anyone has any ideas let me know.

She is not at peace with what's happening and without being able to communicate its very hard to know what to do.

Written by
MRSYafffle profile image
MRSYafffle
To view profiles and participate in discussions please or .
16 Replies
AnneandChris profile image
AnneandChris

Hello there

So sorry to read your post.

If your Mum is getting agitated and fretful you could ask your GP/Nurses for something to calm her. This might be in the form of a driver which will slowly dispense a suitable cocktail of drugs which will help.

End of life care is so important and if you can discuss it with your team it will help you both at this important time.

Be with her, comfort her and reassure her. Keep on keeping on, you're doing so well.

Hugs

Anne

MRSYafffle profile image
MRSYafffle in reply to AnneandChris

Thankyou Anne, I have took your advice and had a talk with her nurse about making her more comfortable with increased meds.

It's the first time they have recognised that we really need the end of life care plan sorted.

At last I feel like there will be some dignity. The GP is calling me and the nurse is meeting me on Monday to sort it out.

I'm just hoping for a dignified passing, it's so cruel.

Thanks again.

LoisMai profile image
LoisMai

It’s heartbreaking isn’t it. Sorry to hear you’re going through this. I went through it all too with my mum - she actually passed away on Sunday and I’m just processing everything we’ve been through over the past 5 years. Mum also passed away due to malnutrition. She couldn’t talk so it was hard to know how she was feeling, I tried to make myself feel a bit better by hoping maybe she didn’t understand what was going on towards the end. However, I continued to talk to her about everything (anticipating her reactions and the things she would have normally said back to me), show her photos, put her favourite music and TV shows on. My advice would be just to comfort her, hold her, talk about all the happy times - this disease can’t take the special times we shared away or the love we have away from us. Mine and mum’s final day together was quite special - lots of reminiscing and cuddles and telling her everything I wanted her to know including how much I love her. When I said goodbye we looked at each other like we knew it was the last time and her eyes were filled with tears and her face showed the most expression it had in a long time so I know she was still in there all along and heard me - she slipped away a few hours later x

MRSYafffle profile image
MRSYafffle in reply to LoisMai

So sorry for your loss, thankyou so much for taking the time to respond even though you are grieving.

You have without doubt did a great job of making you mums passing a lovely and comforting part of her journey. A true testament of your bond, sending loads of love your way. Thankyou so much for sharing, it's a sad journey we are on x

LoisMai profile image
LoisMai in reply to MRSYafffle

Thank you. I find solidarity and support in reading this forum - I’ve found others in real life don’t really understand. Sending loads of love back to you x

MRSYafffle profile image
MRSYafffle in reply to LoisMai

Yes you're so right and what do we sound like? Explaining to people an illness that they do not want to imagine in their dreams. I see their faces and change the subject, so many here are on this journey and it does help. I hope all goes well for you

crwban profile image
crwban

My wife passed away at home 6 months ago with similar symptoms. It has had a traumatic effect on my wellbeing. It is so sad and unfair to everyone.

Please make sure that you contact your GP/District Nurses/Palliative Nurse team so that they are there to support you at this so difficult time.

Lots of hugs x

MRSYafffle profile image
MRSYafffle in reply to crwban

So sorry to hear about your wife. It is extremely harrowing for all involved. I have spoken to her nurse today and was listened to a plan is being put in place for end of life care, the GP is calling me and a meeting on Monday to finalise it. So that's at least a step in the right direction.

I hope you're being kind to yourself after your loss, take care

AliBee1 profile image
AliBee1

Hi. You have already had some wonderful answers that say all that I would have said so just sending you a big hug to try to support you through this time. It sounds as if you are doing the right thing. I found that the music he loved really calmed my husband. Love AliBee

MRSYafffle profile image
MRSYafffle in reply to AliBee1

Thankyou so much for your kind words and support.

I am trying to do a playlist of the crooners who she loved listening to with my dad but I can't listen without crying. Will try harder ❤

GoGreen profile image
GoGreen

I’m so sorry for all that you are going through. All that has been said is so wise! Just want you to know that many of us here are saddened by all you are going through, and understand your frustrations! Take courage!!!

MRSYafffle profile image
MRSYafffle in reply to GoGreen

Thanks so much, great advice as you say and got some things organised a bit more today so that's good.

It's such a hard journey we are all involved in. Thanks for your kind words

Cinderella80 profile image
Cinderella80

So sorry to hear what your mum is going through. I don't think I can add to what everyone is saying. They all have wonderful advice. You have to keep strong. Sending hugs to you and your mum.

MRSYafffle profile image
MRSYafffle in reply to Cinderella80

Just awful isnt it. I've taken the great advice and got somewhere today. I feel much better and focused today. I will stay strong now, I've had my wobble. Thankyou so much

Willowden profile image
Willowden

So sorry to read this. This condition is traumatic for everyone involved.

You might not be in the right place for it at the moment but lots of charities do offer counselling. I’ve just had some via the local hospice and it has really helped me to regain a sense of myself and get a handle on my life again.

Thinking of you and your mum x

MRSYafffle profile image
MRSYafffle in reply to Willowden

Thankyou for your reply .Yes it is very traumatic for all involved.

I'm so pleased that counselling has worked for you. We have this through work, I'm holding off atm as I feel it will be worse later on and I'll need it more.

I have been meditating for months now but the last couple of days just couldn't focus. Will be doing again though it really helps so much.

Thanks so much for your kind thoughts



You may also like...

My mum.

that always put her family first. She hid her struggles at time. So i feel comfort she did have...

My mum is 70 and has PSP 😢

at the moment she had good days and bad. Mum is vey stary and very softly spoken, she at times needs

just lost my mum to PSP

My dear mum Carole was just 63 years old when she passed 30th May this year, we only got a...

My Mum has just been diagnosed with PSP

forward in her wheel chair Her nose involuntarily screws up. She has trouble swallowing however...

My mum my world

indenial to join any network her neurologist has given her this is hard im new to this at the min i...