Syringe feeding

Beezed

Registered User
Apr 28, 2009
446
0
Southampton
Hi Guys,

As some of you know, my mum is end stage. She has recently lost the abilty to open her mouth for spoon feeding so the CH has resorted to using a syringe to give her fluids, Ensure and milky puddings etc.

So far her urine output is good and weight loss not too bad. She is chair and bedbound and mostly mute.

My question is, are we force feeding her? There is probably no straight answer but when I was feeding her today, she quite firmly said NO! I continued nevertheless and she continued to swallow, although slowly with a lot of pouching.

I suppose my problem is that it is all so unnatural and I really don't know if mum wants it or not. I need to provide CH with a letter to say I agree to the use of the syringe as all other methods are proving fruitless. On one hand I don't want her to starve to death but on the other, she has no life, just curled up in the bed endlessly twiching.

Has anyone else been in a similar situation and how did you approach it?

Sorry for the long post but despite all the reading I do on the subject, every new phase takes me by surprise.

Thanks Guys,

Love
Jeanne.
 

Jo1958

Registered User
Mar 31, 2010
3,724
0
Yorkshire
Jeanne, hi
Oh my heart goes out to you, what a letter to have to write and what terrible decisions to make for your mum.
I have no experience of this and everyone's moral's will tell them the rights and wrongs but then when you actually are faced with the choice, well. Sorry not to be able to help.
Take care of yourself, with kind regards from Jo
 

TinaT

Registered User
Sep 27, 2006
7,097
0
Costa Blanca Spain
Dear Jeanne,

My heart goes out to you, it really does. What a terrible situation for you to face. We were faced with something similar when my dad was very ill. He had a major stroke and couldn't open his eyes or speak but he did respond to our voices. The consultant wanted us to withdraw all support. This divided my brother and myself from my mother. She wanted everything withdrawn, and we didn't.

My brother and I moved heaven and earth and got him tube fed for a few days. We arrived one evening to find everything had been withdrawn and he died during that night.

Who knows whether mum was right or we were right? As I say, my heart goes out to you. I wonder what the manager of the care home has suggested? It may be easier if you get some advice from either the manager or the doctor as this will help you in this most hard decision.

xxTinaT
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,450
0
Kent
I would syringe feed if it was accepted, ie if the person readily opened his/her mouth, but I don`t think I would do anything which looked like force feeding.
 

lin1

Registered User
Jan 14, 2010
9,350
0
East Kent
Dear Jeanne
This must be so awful for you.
I didnt face this with my mum thank god .

My heart goes out to you.
 

zoet

Registered User
Feb 28, 2008
705
0
55
Macclesfield, Cheshire
No, you arent. When she wants to stop she will, simple as that. You are giving her great comfort. Its not only about the taste of wht goes in, its about the care and love of the person that gives it to her. Thats worth more than calories to her soul...really. xx
 

Padraig

Registered User
Dec 10, 2009
1,037
0
Hereford
Well said Zoet. From personal experience I found treating the whole person physically and emotionally was the answer (but what do I know?) I can still clearly picture our GP and Daughter stood by the patio door the day I took my wife home as he insisted: "Do not force feed her, you would not like to be force fed." Our daughter agreed and said as much. Each time I open the drawer in the kitchen I see the syringe I initially used to feed her. Maybe I was wrong to stop all medication with the exception of pain relief for her pressure sores. Oral hygiene had been ignored in the NH in addition to so many other things. That same GP told me she would not last the night. Once I cleared her oral thrush she slowly began to eat and put on weight; pressure sores vanished and there was no more need for medication over the following almost five years!
I was just lucky to have been capable of removing my wife from a NH and caring for her at home. Fair dues to the GP, he visited me after the funeral (three years this month 12/12/07) to admit that he had been wrong about me. If only he had tried to question me about the many actions I took to undo the damages inflicted on my wife, he might have learned something. Now my biggest fear at my age is of being afflicted with Alzheimer's. To be 'put away' in a NH would, like my wife did, make me want to give up and die.I do not wish any member of my family to hurt on my behalf. I'm sorry if this offends some, but what I witnessed and still read of the hell on earth that carers and relatives are put through, the truth hurts. When you're thrown in the deep end you learn to swim.
 

Beezed

Registered User
Apr 28, 2009
446
0
Southampton
Thank you wonderful people for your replies.

I suppose the reason I am struggling is that there is now so little I can do for her. At least when I was able to spoon feed her, she opened her mouth. Now she clamps her teeth shut or purses her lips.

I will get over myself as her welfare is paramount. She is receiving excellent care, is well nourished and her skin is in very good condition due to the measures they have taken to ensure her comfort.

I feel she can carry on like this for quite some time and I shouldn't let every little downturn get to me.

Your support really makes a difference, as I know some of you have already travelled this road and your experiences help enormously.

Love,
Jeanne
 

Clarey

Registered User
Jan 31, 2009
28
0
My heart goes out to you Jeanne.

Since she was diagnosed with vascular dementia 2 years ago my partner's family has been working hard to help his mother remain at home. It may be years away but I imagine we may face eating/artificial feeding dilemmas one day.

Sometimes she really doesn't want to take her various medications and syringe feeding is a form of medical treatment isn't it? It feels right at the moment to coax and persuade up to a point, to try to give things in a different form and to make it as easy as possible but to stop short of bullying or forcing her even if that means a dose of something is occasionally missed.

I wonder whether there is a 'soft' approach to using the syringe feeding which would support your Mum in any firm 'NO' giving her as much self determination as possible in the moment but continuing to offer it with gentle persuasion after a pause or at the next mealtime?

You might find the 'Handbook for Mortals Guidance for people facing Serious Illness' by Joanne Lynn worth a look. It has made me think a bit differently about treatments and working out what is in someones best interests when they can't make their own decision directly. I was particularly surprised to read that tube feeding doesn't actually delay death but may make it more uncomfortable in some ways and that apparently dehydration has some medically proven benefits at the end of life. All very uncheerful I know,

Very best wishes,

Clarey
 

Contrary Mary

Registered User
Jun 11, 2010
1,895
0
69
Greater London
I feel she can carry on like this for quite some time and I shouldn't let every little downturn get to me.

Dear Jeanne

It's hard to watch, though, isn't it. Mum often these days cannot open her mouth, but I have the feeling she wants to but can't. So I do try and get as much food, drink and meds in as I can and hope that tomorrow may be better.

Sending sympathy and support
Mary
x
 

sistermillicent

Registered User
Jan 30, 2009
2,949
0
DEar Jeanne,
I am so sorry to read your post.

When I trained as a nurse back in the seventies syringe feeding was strictly forbidden as there is a danger of choking.
It is possible that this is now changed in view of better research, or that it was just my school of nursing's view, I don't know, but we never did it.

I realise that it is probably better to make your mum more comfortable by doing this anyway, very very slowly and carefully.

with love pippaxxxxxx
 

noelphobic

Registered User
Feb 24, 2006
3,452
0
Liverpool
Hi Guys,
My question is, are we force feeding her? There is probably no straight answer but when I was feeding her today, she quite firmly said NO! I continued nevertheless and she continued to swallow, although slowly with a lot of pouching.

I suppose my problem is that it is all so unnatural and I really don't know if mum wants it or not. I need to provide CH with a letter to say I agree to the use of the syringe as all other methods are proving fruitless. On one hand I don't want her to starve to death but on the other, she has no life, just curled up in the bed endlessly twiching.

Has anyone else been in a similar situation and how did you approach it?

Sorry for the long post but despite all the reading I do on the subject, every new phase takes me by surprise.

Thanks Guys,

Love
Jeanne.

My mum died in September and she didn't eat or drink for 10 days before she died. The nursing home said she had stopped swallowing and they were worried that if the kept trying to feed her she would inhale food or drink and get pneumonia. They said that the ony way to get fluids into her was to send her to hospital and I decided against it, with their backing. She died very peacefully.

If your mum is still swallowing then I would say that you are not force feeding her. If she was to stop swallowing then you would need to think again.

I am so sorry that you are going through this. My mum also had no quality of life for a long time before she died.
 

noelphobic

Registered User
Feb 24, 2006
3,452
0
Liverpool
Now my biggest fear at my age is of being afflicted with Alzheimer's. To be 'put away' in a NH would, like my wife did, make me want to give up and die.I do not wish any member of my family to hurt on my behalf. I'm sorry if this offends some, but what I witnessed and still read of the hell on earth that carers and relatives are put through, the truth hurts. When you're thrown in the deep end you learn to swim.

I'm sorry that you and your wife had a bad experience with her nursing home but they are not all the same. It certainly wasn't an easy decision to 'put away' my mum but it was the best solution for her and us.
 

noelphobic

Registered User
Feb 24, 2006
3,452
0
Liverpool
I was particularly surprised to read that tube feeding doesn't actually delay death but may make it more uncomfortable in some ways and that apparently dehydration has some medically proven benefits at the end of life. All very uncheerful I know,
Clarey

I have heard something similar and it helped me to make the decision not to send my mum to hospital at the end of her life. She had very little in the way of pain relief in her final days because she didn't appear to need it.
 

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