Risk Feeding or Not?

GrandDuchessPink

New member
May 19, 2020
1
0
Hi everyone,

I've been reading these threads on and off for a while now but this is my first post because we are really at a loss with what to do for my dad who is currently in hospital with end stage Lewy Body Dementia.

We believe he had a stroke last Sunday because he went from eating very milky Weetabix at 10am to choking on his tablets at 1130am. He has a chest infection and has been on IV antibiotics for a week. He has also been fed via drip and NG tube for the last 5 days as he has no real swallow. He coughed and went red in the face from just a drop of water from the mouth-eze brush yesterday.

The hospital want to know how we'd like to proceed with regard to feeding, and my dad wants to go home. It seems that the choices are risk feeding (which feels like doing something that would actively upset him if he can choke even on a drop of water) and not feeding/hydrating (which feels like starving him).

If my dad was minimally/unresponsive I would find this decision easier to make but he's still communicating socially. He can't speak well, but can point to an alphabet board and whisper words in very slurred speech. He's even been smiling or gently laughing at things that would have amused him when he was well. On the other hand, he has most of the signs of end of life.

My dad has never had insight into his condition and when we completed the respect form after an unresponsive episode last month, my dad was genuinely baffled as to why the GP was asking if he wanted to be resuscitated. His view was 'Of course I would want that because there's nothing wrong with me!'. He could articulate that very clearly to the GP at that time. This makes it seem really cruel to discuss his EOL care wishes with him. I don't want him to feel fear in his last days/weeks if I can avoid it.

I would really welcome hearing about anyone else's experiences here because this feels like an impossible situation.
 

Palerider

Registered User
Aug 9, 2015
4,150
0
56
North West
Hi everyone,

I've been reading these threads on and off for a while now but this is my first post because we are really at a loss with what to do for my dad who is currently in hospital with end stage Lewy Body Dementia.

We believe he had a stroke last Sunday because he went from eating very milky Weetabix at 10am to choking on his tablets at 1130am. He has a chest infection and has been on IV antibiotics for a week. He has also been fed via drip and NG tube for the last 5 days as he has no real swallow. He coughed and went red in the face from just a drop of water from the mouth-eze brush yesterday.

The hospital want to know how we'd like to proceed with regard to feeding, and my dad wants to go home. It seems that the choices are risk feeding (which feels like doing something that would actively upset him if he can choke even on a drop of water) and not feeding/hydrating (which feels like starving him).

If my dad was minimally/unresponsive I would find this decision easier to make but he's still communicating socially. He can't speak well, but can point to an alphabet board and whisper words in very slurred speech. He's even been smiling or gently laughing at things that would have amused him when he was well. On the other hand, he has most of the signs of end of life.

My dad has never had insight into his condition and when we completed the respect form after an unresponsive episode last month, my dad was genuinely baffled as to why the GP was asking if he wanted to be resuscitated. His view was 'Of course I would want that because there's nothing wrong with me!'. He could articulate that very clearly to the GP at that time. This makes it seem really cruel to discuss his EOL care wishes with him. I don't want him to feel fear in his last days/weeks if I can avoid it.

I would really welcome hearing about anyone else's experiences here because this feels like an impossible situation.
A difficult situation for you.

I am surprised that your dad has been given NG feeding at this stage. There isn't anything anyone can do about the situation your dad is in now so it becomes more of making him comfortable and allowing what he finds pleasurable which includes food, which means permitting 'taste for pleasure'. Hydration by medical means is always a short term solution and has no place in long term management. I think rather than see these two options at extremes to each other is to compromise with them both and accept the risks. It sounds like the feeling is that your dad needs palliative care which is a different approach. Has he been assessed by speech therapy for his swallow and have they advised any changes to his diet such as pureed foods should he return home?

I think talking to your dad about DNAR and EOL are fine if he can comprehend the complexity of what he is being asked and to offer his viewpoint on, but if he can't then it may be a pointless exercise anyway -that said family should be involved. I think if your dad wants to go home and take the risk of eating and drinking before as he did before his stroke then why not, there is not much else anyone can do as I said plus he is as you say showing signs of EOL. I think certainly from my own experience and advocating for own mum quality of life especially with a terminal illness has more of a place than quantity of life in these scenarios.
 

Beeks

New member
Oct 26, 2023
4
0
Hi, I completely get your frustration. I’m very fortunate that as a family we have always discussed ‘wishes’ in worst case scenarios. It was never an easy or comfortable conversation but I’m so glad we did.
My Dad’s worst fear was to be in ‘nappies’ in a care home. We never thought it would happen. Then a year ago he was diagnosed with LBD this was the same week he had a heart bypass And the beginning of the end of my Dad.
This week Dad has needed to go into residential care after 6 weeks in hospital. We made the decision to not do anything that extended Dad’s life as he has also developed skin cancer but to ensure he remains as happy as possible and look at quality over quantity.
Dad doesn’t really eat much now, just doesn’t fancy food much, we offer, they offer he has a couple of mouthfuls and declines saying he’s full.
I would not advocate a tube feed for Dad as he wouldn’t want this and the process is distressing I believe as well as the risk of aspirating which would be a very distressing experience. We have a DNR and no hospital admission in place as he does not want to die in hospita. It’s not easy but the decisions made are reflective of Dad when he was able to make these. Sometimes that’s the best we can do and have to accept that what we want and what they want may be differen.
i Think that whatever decision you make, if it’s made with love and consideration for the person then it’s the right decision, that’s all you can do. Don’t beat yourself up over it, don’t feel guilt over it, enjoy the moments you have in any way you are able.
 

Redhed36

Registered User
Apr 9, 2023
47
0
Hi everyone,

I've been reading these threads on and off for a while now but this is my first post because we are really at a loss with what to do for my dad who is currently in hospital with end stage Lewy Body Dementia.

We believe he had a stroke last Sunday because he went from eating very milky Weetabix at 10am to choking on his tablets at 1130am. He has a chest infection and has been on IV antibiotics for a week. He has also been fed via drip and NG tube for the last 5 days as he has no real swallow. He coughed and went red in the face from just a drop of water from the mouth-eze brush yesterday.

The hospital want to know how we'd like to proceed with regard to feeding, and my dad wants to go home. It seems that the choices are risk feeding (which feels like doing something that would actively upset him if he can choke even on a drop of water) and not feeding/hydrating (which feels like starving him).

If my dad was minimally/unresponsive I would find this decision easier to make but he's still communicating socially. He can't speak well, but can point to an alphabet board and whisper words in very slurred speech. He's even been smiling or gently laughing at things that would have amused him when he was well. On the other hand, he has most of the signs of end of life.

My dad has never had insight into his condition and when we completed the respect form after an unresponsive episode last month, my dad was genuinely baffled as to why the GP was asking if he wanted to be resuscitated. His view was 'Of course I would want that because there's nothing wrong with me!'. He could articulate that very clearly to the GP at that time. This makes it seem really cruel to discuss his EOL care wishes with him. I don't want him to feel fear in his last days/weeks if I can avoid it.

I would really welcome hearing about anyone else's experiences here because this feels like an impossible situation.
Hi, I’m very sorry for you. My Dad was admitted to hospital 3 weeks ago with severe constipation, he has Vascular and Alzheimer’s, knew something not right as suddenly went off legs, ended up with hospital acquired pneumonia and deteriorated very quickly, stopped swallowing 2 days ago and yesterday the docs called me in and said nothing else can be done and he is at end of life, massive shock. he lives with me and I have chosen to have him home for his palliative care. I have the same worry as they have said he will always be choking risk with fluids and food. My Dad is very unresponsive the last couple of days but smiles when he hears my voice. I’m hoping to speak to the nutritionist today as to what I will be feeding him and hoping there will be DN support, it was too much to take in yesterday and so today have a lust of questions. The consultant said that they have made the decision to put a DNR in place.
 

canary

Registered User
Feb 25, 2014
24,701
0
South coast
Hello @Beeks , I think all your decisions are very sensible ones
My mum passed away in her care home and the staff tended to her very well

Im so sorry to hear about your dad @Redhed36
Unfortunately, when someone is dying from dementia their swallow goes and they stop eating and drinking altogether. Please do not get concerned when this happens to your dad
(((((((((((((((((((((((((hugs)))))))))))))))))