Little update

Rackjw

Registered User
Dec 31, 2022
38
0
Mums still losing lots of weight- it’s feels like each week there’s quite a drop. The carers in her NH haven’t excitedly told me about anything she’s eaten which they usually do if it’s anything significant. I take her fruit in which she starts to eat but ends up with it all stored in her cheeks. She hasn’t spoken in weeks just makes noises but does still sort of smile.. but this is getting less and less. We had a cancer diagnosis confirmed for her recently and naturally are looking at Pallative care. I had a good conversation with the care home manager who said it’s quite likely her body is shutting down as she’s losing so much weight and she is getting new sores. The care home manager did say you can’t time these things as i well know but she did ask that I let them know end of life plan in terms of things like music and if there’s anything specific she would like in the room and to start looking at funeral directors so I could let them know.. which makes things feel closer. As sad as it is when we visit as she’s just so frail I’m enjoying spending time with her, putting moisturiser on her and brushing her hair and playing her favourite songs.
 

SherwoodSue

Registered User
Jun 18, 2022
699
0
I am so sorry. I think you need to prepare yourself. Have the big conversations with the family and the home. I wish you well xx
 

Jale

Registered User
Jul 9, 2018
1,175
0
So sorry that things are now at this stage. Take care of yourself.
 

SAP

Registered User
Feb 18, 2017
1,549
0
Such a hard time, just waiting for the inevitable. Don’t forget to look after yourself as well, this is going to deplete your stores as well. X
 

Rackjw

Registered User
Dec 31, 2022
38
0
Had a call with mums GP practise to provide details for a universal care plan. Things like where would my mum want to be when she passes and the potential to no longer send to hospital if it can be avoided etc and the GP is due to go in a review mum today. Not sure if I’ll hear anything back on the review! Weird how I thought I’d be prepared for all these topics especially having already been through it with my dad when he had cancer but it’s so strange to have it all happening again and feeling ever so wobbly about it. Might be a glass of wine and a little cry time tonight! Xx
 

Knitandpurl

Registered User
Aug 9, 2021
866
0
Lincolnshire
Sending you hugs, this is a hard hard time, doesn’t seem to matter how much you know it’s coming it’s still always a shock, and in my experience somehow feels too soon.
 

SherwoodSue

Registered User
Jun 18, 2022
699
0
Had a call with mums GP practise to provide details for a universal care plan. Things like where would my mum want to be when she passes and the potential to no longer send to hospital if it can be avoided etc and the GP is due to go in a review mum today. Not sure if I’ll hear anything back on the review! Weird how I thought I’d be prepared for all these topics especially having already been through it with my dad when he had cancer but it’s so strange to have it all happening again and feeling ever so wobbly about it. Might be a glass of wine and a little cry time tonight! Xx
You deserve that glass. Put all the plans in place and then be aware that the event may be nothing like you imagined. For the better or worst. It’s a bit like childbirth, you can read up and write your birth plan but then ……
 

SherwoodSue

Registered User
Jun 18, 2022
699
0
You deserve that glass. Put all the plans in place and then be aware that the event may be nothing like you imagined. For the better or worst. It’s a bit like childbirth, you can read up and write your birth plan but then ……
If you get too fixed on something from ‘the movies ‘ it can deal you a real wallop if reality is nothing like.
 

Rackjw

Registered User
Dec 31, 2022
38
0
Spent the morning with mum today. No communication as usual for most of the visit and just wanted to eat her grapes but she coughed after eating every grape which is new she usually only has one or two coughs but this was continuous as she was eating. She also actually started to not want the grapes which again is unusual as it’s mostly what she’s been eating and enjoying. Towards the end of the visit she definitely seemed to become agitated and started making quite angry sounding noises and hums and just was pulling at her trousers and pulling some odd faces. And for the first time ever she pushed my hand away when I tried to strokes her hair which took me aback. It’s been my main one to communicate with her is stroking her hair or holding her hand but she actually pushed it off and she’s e never done that and thought that was so odd. I let the staff know as I was leaving about the coughing and agitation. Not the best visit x
 

canary

Registered User
Feb 25, 2014
25,379
0
South coast
Next time you visit it will probably be all forgotten @Rackjw

It might be a good idea to try giving her something easier to swallow, though
What about chocolate buttons?
 

Rackjw

Registered User
Dec 31, 2022
38
0
Saw mum yesterday and no real change to her overall, still thin, still reduced appetite, not much communication but she just seems so different these last few visits. She hasn’t been super communicative since late last year but she still had expression and some smiles and she still let me hold her hand or stroke her head but now there’s just no expressions on her face except what I can only describe as agitation or almost annoyance. She keeps pulling away from me and the carers told me yesterday she mainly talks to just say stop or don’t when they need to administer personal care and they think it’s because her pressure sore hurts her to be moved about. I didn’t think visits would get harder but this new look and not liking to be touched is making them harder as it was my only real connection left to her. I of course will always try and now try and ask before I do hold her hand or stroke her hair but of course she doesn’t really understand. I haven’t heard much more about her cancer other than they will administer Pallative care as it’s required but they don’t think she’s in pain yet to need it or any symptom management. She’s definitely coughing way more after eating or drinking anything and the carers said they are having to often scoop food out of her cheeks as she’s storing it there and I can only imagine perhaps her swallowing is going. I just feel a bit defeated at the moment and need somewhere to write it down. One of the hardest things is this limbo of never really knowing what’s next and I send my heart out to everyone going through this and for those of whom it is coming and wish them strength xx
 

Sunshine11!

Registered User
Feb 11, 2022
116
0
This bought back memories of my mum who loved chocolate buttons! I feel for you and send a big hug. If you can, keep writing here. We understand x
 

Rackjw

Registered User
Dec 31, 2022
38
0
Next time you visit it will probably be all forgotten @Rackjw

It might be a good idea to try giving her something easier to swallow, though
What about chocolate buttons?
Buttons have worked a treat.. she’s been able to suck on these and hasn’t been storing these in her cheeks. Only managed a handful but better than nothing and have left a few bags with the nurses! Thank you for the suggestion! Xx
 

Campsie

Registered User
Apr 11, 2024
19
0
Hello Rackjw, My relative is at the same stage as your mum. It's a traumatic time. I agree about the chocolate buttons as they are easy to melt in the mouth and to swallow. Their taste buds seem to prefer sweet things now. At this stage food has little or no nutritional value and there will be no weight gain. It's really only 'comfort' food that they will manage. The digestive system is shutting down and sometimes it can be painful to try and eat food. Small, sweet, tasty, soft and often if wanted. Your mum's skin might be sore and that could be why she pushes you away. Try to put your open hand under her hand and she might take it. Keep chatting to her about things from your childhood. You might not get a response but then again she might be listening and remembering. It's very hard on you and can be a traumatic time. I pray for a release for my relative. I am thinking of you and your dear mum. Keep strong.
 

Rackjw

Registered User
Dec 31, 2022
38
0
Hello Rackjw, My relative is at the same stage as your mum. It's a traumatic time. I agree about the chocolate buttons as they are easy to melt in the mouth and to swallow. Their taste buds seem to prefer sweet things now. At this stage food has little or no nutritional value and there will be no weight gain. It's really only 'comfort' food that they will manage. The digestive system is shutting down and sometimes it can be painful to try and eat food. Small, sweet, tasty, soft and often if wanted. Your mum's skin might be sore and that could be why she pushes you away. Try to put your open hand under her hand and she might take it. Keep chatting to her about things from your childhood. You might not get a response but then again she might be listening and remembering. It's very hard on you and can be a traumatic time. I pray for a release for my relative. I am thinking of you and your dear mum. Keep strong.
Thank you for your message! I didn’t even think about her skin being sore. She’s had a few sores pop up on her feet and she has one by her bum which is from being so thin I believe. So that totally makes sense that she could have sore skin just didn’t think about it on anywhere but her lower extremities. Really appreciate this xx
 

Spottydog

Registered User
Dec 8, 2023
161
0
I just wondered whether skips crisps are an idea...not sweet but small and disintegrate in the mouth x
 

Sunshine11!

Registered User
Feb 11, 2022
116
0
Another thing that Mum really enjoyed were Jelly Drops. The blurb says that these were “invented by someone whose grandma had dementia and was struggling to hydrate”. I don’t know if these help with weight gain, all I know is that Mum enjoyed them.
Mum’s love of Chocolate Buttons was well known by all the Care Home staff. A few tears were shed when one was found in the base of her amaryllis vase, when she passed away but it made us smile too.
Small pieces of satsumas/tangerines were never turned away.
 

Forum statistics

Threads
140,771
Messages
2,021,076
Members
92,452
Latest member
MikeDerry