Malnutrition

[MarieFW]

Hi Everyone. My mother is 6 years into this cruel illness. She is currently in respite palliative care. In recent weeks we have experienced a massive deterioration in her ability to consume anything, including the food we had been pureeing. Her weight has plummeted and she is so so thin.. We are now at a point where she can only consume meal replacement drinks, thickend water and isotonic drinks. We have to hold the cup to her mouth as she is unable/too weak to even do that now. Watching her fade away has been heartbreaking for us. Even more so as she is aware of what is happening to her and is also unable to communicate except to squeeze out hands or a little thumbs up. We are linked in with palliative care team and the speech therapist, Moms decision was made early on not to PEG feed. Her health has been overall good aside, No aspirating or saliva issues. Only one kidney infection recently -exasperated by dehydration and managed by antibiotics. My question is, in your experience, how long did your loved one hold on for with such little intake, as my gut tells me this will be what eventually takes her. Thank you.x

[easterncedar]

my heart goes out to you, Marie. My hospice team emphasized that focusing on feeding is not always helpful in end stages, but that because it’s how we always show love and care it can be harrowing to let it go. Minimizing pain for as peaceful a passing as can be is probably I think the best thing to aim for. My sweetheart stopped accepting food and liquid and died in 10 days. He was largely unresponsive the last 5, sleeping most of the time, but clearly knowing when loved ones were around. Wishing you and your mother and family what peace and love and comfort there may be in this heartbreaking time. Ec

[WifeLilyRose]

My husband’s story is much like that of Eastercedar’s partner. He just began to eat and drink less and less with great difficulty in swallowing and getting extremely fatigued, about two weeks before he died. Then even opening his mouth became impossible. His body was closing down and he went into a calm, still sleep, not needing pain relief. The hospice nurse and district nurse who both visited at home in the last week moistened his lips but reassured my daughter and I that he would not be in distress and feeling thirst. The day before he died a hospice bed became available and he transferred there with me by his side. It was a relief in that I could just focus on being his wife after over a year intensely nursing him at home with full time carers. He never opened his eyes again but the next afternoon with us holding his hand and talking softly to him, he calmly, peacefully slipped away. A good death if one can say such a thing.

My thoughts are very much with you. The end for me was nowhere near as upsetting as I thought it would be after watching his deterioration over the last year. There was relief that he was free from such an awful disease. It really all came down to showing him how loved he was. Susanne X

[AnneandChris]

Marie, this sounds so familiar as do the two previous responses. Once Chris stopped consuming even miniscule amounts he became sleepier and sleepier. He did have a driver fitted to relieve some distress, but otherwise his end was very peaceful. I was there holding his hand when he let out a huge sigh and died. This was such a relief as this cruel disease had reduced him to a shadow of his former self.

So my thoughts are with you at this time, keep on keeping on.

[T-val]

This post could have been written by myself, we are at the exact same stage and I have the same questions. My mum is just struggling to swallow at all now, even to drink. Her bad days are becoming the norm but then she always seems to rally however her baseline is now on a huge decline. This illness really is cruel and unfair. I just wanted to send my thoughts to you at this really tough time xx

[WifeLilyRose]

This might help T-val too. I do wish I had been told more clearly and sooner to stop trying to get my husband’s meds into him. And also to be told more clearly that the end is a few weeks away. I suffered a lot of stress thinking I was doing the right thing by trying to get even liquid meds into him and then he would be too exhausted to try to even drink. I kept asking too how the end would be in those last few weeks ( as I was frightened. I’ve sat with two family members as they died and it was not a “ good” experience ) It was the hospice team who spoke to me honestly. By then I was too exhausted to fight my ( or Paul’s? ) corner anymore. Sending love. S X

[T-val in reply to WifeLilyRose]

Thanks, it's good advice. I'm extremely grateful that Mum's palliative consultant is amazing and speaks to me honestly and frankly. We too have stopped all her 'long term' meds and now only takes glycopyrroneum which helps the dyphagia and lactulose with occasional pain relief. The hard thing is she looks quite well when sat in her chair watching TV and family only see those brief good times when they call and not the struggles to eat and drink so don't realise how bad things are. I'm so thankful that this psp family are here to reassure or I would be really struggling to make any sense of any of it x

[WifeLilyRose in reply to T-val]

You are welcome. Always here if I can help in anyway. This PSP family is vital and here in the UK I shall maintain my link with the PSP Association who are doing such important ongoing work. Do look after yourself. It gets very hard to do so and I am still very much suffering the effects of burnout, even after 9 weeks. S x

[MarieFW]

Thank you all so much for sharing your advice and personal experience, most of all It's hugely comforting to speak to others who understand xx

[AJK2001]

Mum seemed to live on meal replacement drinks for several months, she started to fade seriously about 6 weeks before she died. That's when she stopped wanting to go out and generally lost interest.. We had end of life drugs prescribed at this point so they were ready for when needed. She was relatively fine, but became dehydrated as the swallow just gradually stopped. We declined a hospital stay to rehydrate as this wouldn't change the outcome and only be frightening for Mum. A couple of mornings later the carer rang saying she was unresponsive, she died peacefully with my husband and I holding her hands about 36 hours later. It was very peaceful and she was well looked after by carers she knew well and liked, in familiar surroundings, which was what she had wanted.

I hope your Mum has an equally peaceful passing when the time comes. Thinking of you.

[Troubleandstrife]

My husband survived 13 days with no food or water. Just regular microdoses of oramorph through his feeding tube. This is so hard, but letting them go of a body that will not heal is the compassionate thing to do. I'm sorry.

[MRSYafffle]

Sending you all the love , I'm on a similar journey with my mum. I wish I had answers for you, take care

[MarieFW in reply to MRSYafffle]

Hope you're doing ok. It's a long and hard road for all of us

[MRSYafffle in reply to MarieFW]

Is certainly is very difficult. I hope you are managing. Sending love your way.