Significant Weight Loss

[GeorgeMMXVI]

Hi all,

My Mum is 73 with PSP and in a nursing home. Her latest weight was 37.2Kg😳 She has lost 3.7Kg in a month. She is on a puréed diet and thickened liquids which need to be spoon fed. The dietician has said she needs fortified foods and shakes, but they said the same thing last month. I did manage to have a discussion with Mum just after her diagnosis about PEG feeding when the time comes, but said she did not want that. The home are aware of her wishes but have asked me about this again today. I want to respect my Mum’s wishes but I’m concerned we’re nearing the end. I’ve requested another CHC checklist is completed and we’ll see where that goes. The ICB rejected the last one 2 months ago suggesting she could not have declined that much in 5 months.

Sorry, just sounding off. Thank you for reading.

Nicki

[KB_1_]

Hi Nicki,

This sounds very very similar to my where my Dad is at, he’s 72, been in a nursing home for 3 years now. He is in the very advanced stages of this awful illness. I just wanted to send you a massive virtual hug. It’s so so tough xx

[GeorgeMMXVI in reply to KB_1_]

Thank you so much xx

[Kelmisty]

Hi,

My Mum has been steadily losing weight for three years and is now a tiny 7st. She’s refused a peg too and won’t eat the fortified drinks/shakes or anything she doesn’t like which means it’s very difficult to get weight on her.

I think it’s normal, but I would keep pressuring CHC as they need to get to grips with this illness, exhausting as it is.

X

[GeorgeMMXVI in reply to Kelmisty]

It is exhausting but we’ll keep fighting the fight xx

[PineEater]

GeorgeMMXVI

Sorry to learn of your dear mom's worsening condition.

If she won't take fortified foods and shakes, she would continue to loose weight. Does she still cough and choke with the pureed diet and thickened liquids she takes? If yes, then if PEG feeding is not done, there is no way she could gain the desired weight. Or is there any other mechanism via which that could be achieved? It is very very very distressing for me to watch a loved one to cough and choke while eating and drinking. Or is it not? I would continue to be optimistic and hence go in for any feeding mechanism that would prevent her from coughing and choking while eating and drinking. Best wishes to you and your mom.

[GeorgeMMXVI in reply to PineEater]

Thank you for your response. She does choke on her thickened liquids. The swallow seems to be slowing. She seems to keep what little she does take in her mouth for ages. She has now been prescribed some of her meds in liquid form but sometimes they just dribble back out 😳

[JAK63]

Hi Nicki

I am sorry to hear this about your Mum and can sympathise because this is the exact story for my husband. Admitted to a care home in April weighing 71 KG and he is now 51KG. I spend a lot of time with him so I know how difficult it is for him to take enough food and liquid to maintain any level of weight. We have rejected the PEG feed and this was agreed by the care home nurses and GP. It was too late and his body could not take the process or indeed the increased nutrition at this late stage. He's been on food supplements and high calory drinks but it has made little difference. I have had to accept that his body is shutting down and he is nearing the end. In doing so I have become much calmer in the last few weeks and I think my husband has too. He does have one to one care now during the day, so that he has time to eat and drink as much or as little as he wishes.

My advice would be to respect your Mum's wishes and not to put her through any unnecessary trauma.

My thoughts are with you as we both move towards the end and final peace for our loved ones.

[GeorgeMMXVI in reply to JAK63]

Thank you. I’m trying to respect her wishes but when the home keep asking me it’s like they’re disregarding them. This was all documented when she became a resident. It makes me feel guilty even though I know she wouldn’t want this existence 😳

[LeafCuttle]

EDITED 01.11.2024 (Apologies for my original reply I think it was a bit much)

Hi GeorgeMMXVI, and everyone in this chat, I’m so sorry for what everyone here is going through. It’s so painful to witness.

I would say trust your instincts about where you are in terms of progression. Maybe you could ask for the gp, or her consultant, to urgently review. That might help with the CHC. It’s so frustrating that the ICB don’t understand that things can change quickly.

If the gp/consultant agree with you, then you might want to look at the fast-track option for CHC. It’s meant to make funds available for necessary care and support available in a matter of days, but requires “an “appropriate clinician” who determines that the individual has a primary health need” (gov.uk/government/publicati...

Re eating, my mum often preferred to just have weetabix in hot milk, or mini yogurts or mini chocolate custard. And we switched to feeding her via a teaspoon. That all seemed a bit more manageable for her.

Could you also ask for a SLT review? When my mum was reviewed the SLT wrote out new more compassionate guidance re feeding mum, making sure people were taking the time to gently explain the food infront if her, allow her to smell it etc and let her/her body make the choice as to whether to eat or not. That might also support any CHC as it will require extra time and someone who is calm to be able to sit with her and go at your mum's pace.

I hope you can get the support you and your mum need at this time. And that she is as comfortable and well looked after as possible. I know at this time it’s hard but it’s important to also look after yourself too.

[GeorgeMMXVI in reply to LeafCuttle]

Thank you. Please don’t apologise for your original response. It’s helpful to know what to expect and when. Mum has seen SLT recently but I will request another review.

[easterncedar]

Our hospice social worker said it is one of the hardest things to let go, our impulse to care by focusing on feeding. It’s basic. It’s elemental. It’s how we show love all our lives. But when the body is shutting down it can’t process food, and trying to keep weight on can become dangerous in itself. We as caregivers need to pay attention and not push. It’s a very hard path to walk.

Leafcuttle is right. I totally second all their advice, especially that last paragraph. Take care of yourself, too.

[GeorgeMMXVI]

Thank you 🙏