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

[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

[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.

[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.

[LeafCuttle]

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 won’t go into too much detail about our experience but it sounds very similar to what happened with my mum who was diagnosed with CBD but whose symptoms seemed to overlap with PSP more towards the end. She died in June this year, 1 year after confirmation of CBD.

[NOTE I do talk briefly, and I believe gently, about how i experienced the last few weeks of mum’s life, which I appreciate not everyone is ready to read. It’s probably more upsetting for me to write than for others to read, and I don’t think there’s anything included I wouldn’t have wanted to know, but even certain words can be difficult information to take in so go slowly and easy on yourself, esp if you’re feeling fragile about what’s happening. Maybe skim through if you’re concerned about yourself. ]

I would say trust your instincts about where you are in terms of progression. Are/have you considering/ed palliative care? No one seemed to recognise what was happening with my mum and so the hospice weren’t involved until her final week, when in fact we could have been advising on best care for her entire journey from (terminal) diagnosis onwards.

Re CHC are you aware of the fast-track option? It’s meant to make necessary care and support available in a matter of days. It will require “an “appropriate clinician” who determines that the individual has a primary health need” (gov.uk/government/publicati...

In my mum’s case it was the third of an incredibly severe series of infections that led to hospitalisation for sepsis, which she was treated for and recovered from, but it was only there that the doctors recognised what was happening. Mum was escalated to an emergency placement at a hospice near to us, so CHC was no longer relevant at that point, but we’d had no idea it was even an option. It could have made a big difference in the nursing home esp as she hadn’t even yet been assessed for the DST part of CHC.

Re eating, mum seemed to struggle to initiate opening her mouth, and we were never sure if she was in fact refusing food. We believe mum wouldn’t have wanted PEG, and at the hospital she was deemed too fragile anyway for that procedure by the consultant, plus the possible downsides really sounded to outweigh the benefits.

It was also whilst in hospital that their 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. Prior to that staff were shoving food in her open mouth whilst she was screaming.

After that changed, mum seemed much calmer and took very little food or water, which was extremely distressing for us, but she seemed okay.

If it helps, the hospice assured us that someone not eating in the last stages is not like being well and feeling hunger. As I understand it now, digestion is so labour intensive it can be one of the first things the body relinquishes in order to preserve energy.

I understand it might not be for everyone, but I feel because we were so unprepared it felt like things were happening so quickly and we were so shocked and confused. I really wish we had had someone to talk to us about the nature of dying and death, to be honest from the start. I’ve read lots since and I feel it would have been helpful to have been more aware at/before the time. The hospice were not familiar with mum nor her condition and we think that impacted how she was cared for whilst there. If they’d been involved from the start they would have had more time to acquaintance themselves with the complexities of CBD/PSP.

Personally, had we known how close mum was to the end in her final week I would have insisted we kept vigil. We were together at her end, which I’m thankful for, but she didn’t seem concious so (personally) I wish I’d been able to have even a moment to be with her when she’d still been awake.