PEG feeding

noelphobic

Registered User
Feb 24, 2006
3,452
Liverpool
Quick update

The GP saw my mum today and advised that she be started on Ensure! I was expecting (and dreading) something more radical than that so was somewhat surprised when I found out. However, she has been more alert today and seems to have eaten and drunk a little more. The worrying thing is that she seems to have developed a tendency to keep small amounts of food in her mouth for a long time, to the point that she can fall asleep like that. I noticed food in her mouth last night, long after she had eaten and the same thing happened tonight. My sister had managed to get her to drink some thickened orange juice and she had also had some liquid medicine. Just as I was about to leave I realised she had a small piece of what looked like tinned fruit in her mouth. It must have been there for hours literally. Obviously the worry is that she will choke on or aspirate food. However, it appears that we are not going to have to make any major decisions immediately.

Thanks to everyone for being so supportive as always. It has helped me to think the pros and cons through and hopefully I will be a little clearer if the time comes when I do have to make a decision such as this, whether that be sooner or later.

Brenda
 

noelphobic

Registered User
Feb 24, 2006
3,452
Liverpool
Canadian Joanne said:
I have read in various places that there is a process in dying in which actually been fed will cause more discomfort than not. Whetehr this is true or not, who knows? No one has been there & back to tell us about it. It does make sense to me, that it's a part of the natural process.
Love,
Joanne
I did read somewhere that it could actually be beneficial to be dehydrated because this would mean that the lungs would not fill with fluid, which would cause discomfort.

I remember the days when I used to read for pleasure :eek:
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Brenda

Really good news that you don't have to make and major decisions. Also good that your mum is able to eat a little, and the Ensure will give her more strength to recover.

A bit woorying about keeping food in her mouth, though. Did you mention it to the staff? It sounds as if she needs to be checked after each meal.

So glad your news is better,

Love,
 

MrsP

Registered User
Mar 19, 2005
115
Having a PEG doesn't automatically mean patients are bedridden
That's right, in fact it's better if they are kept up mobile as lying flat in bed is more likely to cause aspiration.

A difficult decision for you, don't know what's for the best.

Take care, Kate x.
 

noelphobic

Registered User
Feb 24, 2006
3,452
Liverpool
Skye said:
Hi Brenda

Really good news that you don't have to make and major decisions. Also good that your mum is able to eat a little, and the Ensure will give her more strength to recover.

A bit woorying about keeping food in her mouth, though. Did you mention it to the staff? It sounds as if she needs to be checked after each meal.

So glad your news is better,

Love,
Hi Hazel

I'm dubious about the Ensure. If she has difficulty in swallowing blended food and thickened drinks then I think she will have just as much difficulty in swallowing the Ensure. However, I don't suppose we have anything to lose by trying it. I had thought of suggesting it myself, and I didn't have umpteen years medical training :D

I couldn't find anyone tonight to mention the food being retained in the mouth. Last night soon after I noticed it the staff came in to move her to a more comfortable position in the bed and one of the nurses noticed it then. Tonight there was no one around. I'll give them a ring tomorrow and ask how she is and mention it then.

Brenda
 

noelphobic

Registered User
Feb 24, 2006
3,452
Liverpool
MrsP said:
That's right, in fact it's better if they are kept up mobile as lying flat in bed is more likely to cause aspiration.

A difficult decision for you, don't know what's for the best.

Take care, Kate x.
Hi Kate

I asked one of the nurses about this and he said that they do have a couple of residents with PEGS who sit in the lounge. I do worry that she would pull the tube out though, especially if she becomes agitated. She doesn't generally tolerate drips very well, and I can imagine her being the same way with a PEG.

Brenda
 

jenniferpa

Registered User
Jun 27, 2006
39,448
I'm glad you raised that (about pulling the peg out). I can see us going down this road at some point in the future, but I can also imagine that given half a chance my mother would pull it out - is it possible to do that?

I'm glad your mother seems a bit better. Will she drink the ensure? Mine dislikes the taste (or possibly the texture), so we've not had much luck with that. She will however drink milk. Not that she has any problems swallowing per se - she just says she's not hungry and that's it.

Jennifer
 

noelphobic

Registered User
Feb 24, 2006
3,452
Liverpool
jenniferpa said:
I'm glad you raised that (about pulling the peg out). I can see us going down this road at some point in the future, but I can also imagine that given half a chance my mother would pull it out - is it possible to do that?

I'm glad your mother seems a bit better. Will she drink the ensure? Mine dislikes the taste (or possibly the texture), so we've not had much luck with that. She will however drink milk. Not that she has any problems swallowing per se - she just says she's not hungry and that's it.

Jennifer
Hi Jennifer

I've had an email from someone on another group I belong to who is a nurse. She did say that dementia patients were prone to pulling the tubes out and that it would be very painful if that happened. I don't really understand the mechanics of it though so am not sure about whether it would actually protrude or not - I assume it must if it is possible for it to be pulled out. I will have to ask the question if we do get to the point of having a discussion about whether or not to go down this route.

My mum has had the Ensure in the past and doesn't seem to mind it, depending on the flavour.

I have thought a lot about what my mum would want in respect of the PEG and I just don't know. It might make it easier if I did - although I am sure it would still be tough!

Brenda
 

noelphobic

Registered User
Feb 24, 2006
3,452
Liverpool
Pulling tubes out

Just read an interesting study, which is obviously very anti-PEG feeding in dementia patients. I wouldn't make my mind up on something as important as this on the basis of one article, nor would I recommend anyone else to. However, on the subject of pulling the tubes out, the second paragraph from the end comments on this and it does sound as though it is a real concern.

http://www.aafp.org/afp/20020415/1605.html

Brenda
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Very interesting, particularly as it seems to be a meta analysis (a compilation of many studies) and peer reviewed. In a way, I'm in a better situation than you - I'm reasonably certain that mummy would not want to be fed in this way, and as much as anything, I'm preparing myself to be person who says "no".

There is another way to look at it perhaps Brenda - how would you feel about it if it were you? We are so much the product of our parent's views, that I doubt that your opinion on the subject would be radically different to that of your mother.

Jennifer
 

noelphobic

Registered User
Feb 24, 2006
3,452
Liverpool
jenniferpa said:
We are so much the product of our parent's views, that I doubt that your opinion on the subject would be radically different to that of your mother.

Jennifer
Don't think you'd say that about me and my 18 year old son :D
 

DeborahBlythe

Registered User
Dec 1, 2006
9,222
That was a good article Brenda. I particularly liked the recommendations bit. Bought myself a box of miniature chocolate bars yesterday, by coincidence. S'pose I'll have to try sharing them with my mum now.:(
 

Sandy

Registered User
Mar 23, 2005
6,847
noelphobic said:
The worrying thing is that she seems to have developed a tendency to keep small amounts of food in her mouth for a long time, to the point that she can fall asleep like that.
The tendency to retain food in the mouth appears to be another aspect of the problem with swallowing. The medical term for this is dysphagia. There are some good articles out there on dysphagia (try Googling the terms dysphagia and dementia), here are a few:

http://dementia.ion.ucl.ac.uk/DRG_Website/Candid/Candid_factsheets/facts6new.htm

http://speechpathology.com/articles/article_detail.asp?article_id=305

http://www.geriatricsreviewsyllabus.org/content/agscontent/eatfeed6.htm

The professionals who are best trained to deal with swallowing problems are Speech and Language Therapists. You can find out more about their services from their Royal College web site: http://www.rcslt.org/aboutslts/

Also, that was an excellent link that you put up for that article on feeding tubes and people with dementia - thanks for that.

Take care,

Sandy
 

Margarita

Registered User
Feb 17, 2006
10,824
london
As for the religious thing - I think there is a great difference between helping some one along & letting nature take its course.
When last January 06 my mother sister had a massive stroke in the back of her brain , that I was told that they would be no recovery of those brain nerves , that she would be total bed ridden , and not sure how paralyzed she would be It was a really a shock to be told that. I was the only next of kin

I must say that religious belief did not enter my mind , we are RC , ones that took of all the tubes and machine that was keeping her alive , and was just left with a tube in her nose and is was still breathing on her own , looking at me , then spoon feed , not what I would call good quietly of life , but life is better then no life and I just let nature take its course , if she would of not wanted to eat . I would of not let them make her eat , but she did want to eat , then when she sadly had another stroke, that did not kill her only more brain nerves , , so then was not feeding or drinking so they ask me , if I wanted to let her have morphine so I said yes, because god only knows what pain she would have been having after the other stoke and not eating now or drinking & still breathing

What I am trying to say is try not to think about what you would or would not do or what your mother would of wanted , the whole perception how you perceive it in what is going or not going to happen in the future or what your mother would of wanted can be very stress full you now , I know we all like to be prepared , and respectful to them , but who knows the future when the moment arrives you someone know what to do . .

I do not think to much into the discussion I made for my mother sister , if it was for the best or not , that’s how I cope with it all

Please to read that your mother has improved a bit
 
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alex

Registered User
Apr 10, 2006
1,665
Hi Brenda

I'm a bit late in catching up with this thread, mainly because it was a bit of a painful subject for me................i suppose i was in a similar situation with Ray and being brought up strict catholic i suppose that had some bearing on my decisions too (although i have not been catholic for sometime, the teaching tends to stay deep within) i believed that life should be preserved come what may and every attempt should be made to save a person.

Throughout Rays illness i did not waver in my beliefs, they were helped along by the fact that i somehow could not let go of him, even though he was suffering so badly.............i objected to switching off the life support and brought in my own team of specialists to fight my case, the hospital agreed and kept him going, it resulted in 2 severe strokes and vascular dementia............even then, the hospital did not want to peg feed, but i insisted............result?...........the most horrendous suffering, more pain and guilt.

Brenda honey............it took this idiot 6 months before i had the guts to tell him it was ok to let go...............why?.........because i realised that whatever decision i made, the end result would remain the same...........he would still die!!!............but had i not been so bloody minded, i could have saved him the agony i put him through...............if i had the same choices over again, i'd do everything differently, its so hard to let go of someone you love, but it can be even harder to to hang on to someone who can't stay............its your choice Brenda, you need to do what you feel comfortable with, but if i was you, i wouldn't go there again, regardless of any religion, its not worth the heartache.

Good luck with your decision.

Love Alex x
 

noelphobic

Registered User
Feb 24, 2006
3,452
Liverpool
alex said:
Hi Brenda
Brenda honey............it took this idiot 6 months before i had the guts to tell him it was ok to let go...............why?.........because i realised that whatever decision i made, the end result would remain the same...........he would still die!!!............but had i not been so bloody minded, i could have saved him the agony i put him through...............if i had the same choices over again, i'd do everything differently, its so hard to let go of someone you love, but it can be even harder to to hang on to someone who can't stay............its your choice Brenda, you need to do what you feel comfortable with, but if i was you, i wouldn't go there again, regardless of any religion, its not worth the heartache.

Good luck with your decision.

Love Alex x
Thank you for sharing this Alex. I know it must be incredibly painful for you. I think my mind is pretty much made up and I have decided that I would not be in favour of peg feeding, for many reasons. One thing that has helped to clarify it in my mind is reading that it does not necessarily prolong life and that it does not exclude the possibility of aspiration pneumonia. Also the idea that my mum might pull the tube out and thereby cause herself pain and distress. However, the day does not yet appear to be here when that decision needs to be made and it would not be solely my decision. The problem would be if my sister took a totally different view to myself! It's also possible that it may not be a decision we are ever called upon to make so I will try to stop agonising and worry about it again if and when I need to - whether that be tomorrow, next week, next month, next year or never - as something else may take my mum away from us first.

On the subject of agonising, try not to beat yourself up over the decisions you made Alex. I know that's easy for me to say and I can't change the way you feel but I know you made those decisions with the best of intentions. You have no way of knowing how things would have been had you made different decisions - the road less travelled etc. If you had 'let him go' earlier then he might not have been ready to go and you could be agonising now about whether you should have fought harder to keep him alive. What noone can doubt is that you loved Ray with all your heart and he was lucky to have you in his lfe and fighting his corner.

Take care
Love
Brenda
 

noelphobic

Registered User
Feb 24, 2006
3,452
Liverpool
Sandy said:
The professionals who are best trained to deal with swallowing problems are Speech and Language Therapists. You can find out more about their services from their Royal College web site: http://www.rcslt.org/aboutslts/

Also, that was an excellent link that you put up for that article on feeding tubes and people with dementia - thanks for that.

Take care,

Sandy
The nursing home have asked for the speech therapist to visit urgently. However, there is apparently only one speech therapist for the whole area so I'm not sure how quicly an urgent request would be actioned! I'm also a bit unsure as to what a speech therapist could actually do, apart from confirming that mum does indeed have dysphasia - and even I can see that. However, I will look at the link and see if that gives me any ideas.

thanks Sandy.
 

Margarita

Registered User
Feb 17, 2006
10,824
london
On the subject of agonising, try not to beat yourself up over the decisions you made Alex
Strangely you should say that as that what I have been doing for the last year , because horrible to say I love my mother sister as much as my mother as she show me more love then my mother and try to make me understand my mother more when she got ill , as my mother sister brought me up from the age of 10 years to 21 in gibraltar , the only way I can now stop agenizing is to think of her strong faith a RC in Jesus Christ , now to some this may be just an illusion , but not to my auntie , her faith at all time was thinking about it now, is that she would be with him in death , I can’t bear to think that she not , so I live in that illusion if people call it that , because it help me move toward into every hear now I can’t let go of that day as much as I can not let go of her love for me .

because for me not to have my faith , life would be to cold and worthless so i am glad to have my faith that I was given as a child to hold on to now .

I say worthless because I can get very bitter in how god let this happen to someone I deeply love how he of could of let her get like that , that I had to make that diction (sp) . I can not keep going down that road , so renewing my faith even if I think not so much in the story’s rules , I was brought up with in the RC religion, I have my own faith , spiritual rather then a religion it make me feel better so what make me feel better and take the pain away I go with it .
 
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Traybake

Registered User
Mar 30, 2007
1
N. Ireland
Hi Brenda

I am glad you have reached a decision about the PEG tubes. I don’t want to confuse you but I thought I might share my experiences of PEG feeding with you

About four years ago my mother stopped eating despite lots of encouragement and one to one attention at meal times. She became dangerously dehydrated and was admitted to hospital. Mum seemed to me to be refusing to eat due to depression rather than through any loss of swallow function. The speech therapists were very nice but refused to confirm to me if there was a true loss of swallow. I felt that if I could get her over the depression she might eat again.

Mum hated drips and fought like Mike Tyson to prevent any nasal drip etc. the only other option was a PEG tube. In the absence of a firm diagnosis by the speech therapist I decided to elect for the PEG tube. I then had to make a formal complaint to the Hospital board as time after time she was put to the bottom of the operation list and had the procedure cancelled when other Ops over ran. There was undoubted resistance from the hospital to my decision.

The PEG tube was eventually inserted and all was well for a time and Mum put on weight and was healthier than she had been for years. The nurse at the home was excellent at dealing with the PEG tube. Mum did dislodge it but it was, for a while, easy to reattach. Unfortunately the home went out of business shortly after and I had to move mum to another home where they were not used to maintaining a PEG tube. There then started a cycle of draining visits to the A&E dept of the local hospital to have the tube reinserted. I forget now the full medical ins and outs but only a special type of doctor would reinsert the connecting tube even though it was a minor thing. This meant long trolley waits in depressing corridors holding mums hand and trying to reassure her. Eventually mum got more proficient at tugging at the PEG tube. It came away completely and to replace it would have needed a second operation. I then decided she had gone through enough and told them not to replace it. The staff at the new home may not have been very good with the PEG tube but amazingly they made special efforts and were able to encourage her to start eating again. She is still eating away to this day.

Everyone’s situation is different and no one can tell you what the right thing to do is. The PEG worked after a fashion for my mum but it was a difficult time. For what it is worth, should it happen again to my mum I would try to tie the Speech therapists down to a proper diagnosis,(although frankly I doubt if they can tell whether a swallow function exists or not) and then consider if a PEG might be worth it for a short time. It definitely would not work on a long term basis for my mum.

Good luck and be sure to seek out support from friends and families if and when you have to make a decision
All the best
Niall
 

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