Mum losing her swallowing and PEG feeding being talked about

[Maya]

My mother has been cared for at home for one and a half years now. We have agency carers coming in to feed Mum. When she came out of hospital her swallowing was not great and we took great care in how she was fed with regular review by community speech therapists. We have given the types of food that can be easily thickened or blended and stuck to food that Mum likes or fortified drinks recommended by the GP.

She coughed but we slowed down and encouraged her to swallow and so on following advice from ST. It was a battle trying to get carers to understand that it was a matter of quality not quantity as Mum's fatigue has increased.

Now she is gagging sometimes and retching and we stop completely.
One care giver was so desperate to feed her quickly she used an oral syringe without my knowledge. I reported her and she will not be back. The community team mentioned suctioning has anyone had this treatment or seen how it works ? It would mean mum going to hospital which I am not keen on as her health has always taken a dive when that happens.

PEG feeding has been talked about but I know there is an ethical issue here. My dilemma is one I am sure that other carers have had. Mum has windows of lucidity and responsiveness - she is often sleepy and vague but she is still there and when she looks at you with those big blue eyes I can't explain but its her. She has a way of saying no to food even though her speech has gone she kind of speaks with her eyes but is most responsive to people who really speak to her and not at her. And then of course I just don't want to lose her - I can't bear it. I don't know what to do. No one in the family comes any more. I think it scares them. I have no one to talk to about it really. I have my fiancé but he just lost his Mum to cancer and this must be a lot for him to cope with.

Does anyone have any information on this ? Any views ?

 

[LEEANN4832]

im here for u x

i am hoping that my little lady doesnt have to be pegged ive heard so many bad storys about it she is currently on iv antibiotics for asparation phneumonia ..........ive looked after her for 14 months now and i dnt want her goin to nursing its so unfair with regards to ur other ask urself what would she want and if you think she would like to be 'pegged' then ur doing the right thing i think its so awfull to get to a age wer you dont get a choice weather u live or die and this world we live in people only care about there wages ie paye so with regards to the so called crer who feb ur mother she will b the reason ur mum possibly has the same phneumonia as the lady i am looking after my quarm is the fact that people dont care about others and just look at things like a chore i hate in conciderate ppl one day they will grow old what would they do thats what i always tink????

 

[Maya]

Yes that carer was particularly wanting in some of the essential qualities needed but thankfully we have others who are good and who do care like you ! I just replied to your own post ! Yes the PEG thing is difficult I never got to ask Mum about it and now she can't respond.

I might ask the hospice social worker to assist as she seemed to have good rapport with mum and might see something I am not. I wouldn't want it myself I don't think. I find it hard making the decision for someone else.

 

[piedwarbler]

Dear Maya
I dread this happening to my mum but know it's likely to one day. I think you probably know more about your mum's views than anyone. Was she one for going to the doctor as soon as anyone was poorly? Or did she avoid doctors and hospitals if she could? My mum has always been keen to avoid doctors and has hated seeing them. On top of this she was in hospital last year next to a lady who was going to be peg fed and we had a chance to discuss it. Mum said she wouldn't want it for herself, even though when it comes to it. Even so I can't help thinking if it comes to it she might have felt differently. I don't suppose this helps much, you are in a terrible situation and I know whatever happens you will have done your very best for your mum, so will have nothing to reproach yourself for.

 

[Grannie G]

I would refuse PEG feeding outright.
I have witnessed a cancer patient having an unhealing infection with a PEG , giving him additional pain and discomfort.
In someone with dementia, as there is no chance of a cure , a PEg would not act as an interim procedure, a contribution to a better life, it would just prolong the agony.
This is only my opinion .

 

[Onlyme]

I agree with Sylvia. In someone who has a good prognosis then it is understandable but not for someone with this illness. It is just prolonging their pain and suffering.

Sorry if the above seems rude but my MIL's suffering was prolonged and having seen it first hand I wouldn't wish it on anyone.

 

[lin1]

Hello
Am sorry to hear about this distressing time you and your mum are going through .

I think its a very good idea to speak to the Hospice SW and maybe some more involvement by the Hospice. Our local Hospice took wonderful loving care of mum last yr when she was going for regular respite care .

Speaking personally neither dad nor I would have wanted peg feeding for mum, we never discussed it with each other let alone with mum,

What happened was mum was ill and I had called the gp out , after seeing mum he started to discuss what we wanted for mum as he thought mum was at end stage (she wasnt it was the infection and mum recovered ) he asked if we wanted peg feeding , dad n I just looked at each other and both said no at the same time. for the same reasons as Sylvia and Lemony said above.

Often we have to make decisions for the ones we love and care for that have not been thought about or discussed , all you can do is what you believe is right for them at that time,

 

[Beezed]

Dear Maya,

My mum is at a similar stage to yours but sadly she no longer has the capacity to open her mouth to accept a spoon. We have had to resort to a small syringe to feed her.

I am in agreement with Sylvia that PEG feeding will serve no purpose but to increase my mother's discomfort. When she finally loses her swallow we will resort to palliative care.

It is not a decision one makes lightly but when the prognosis is so poor, the comfort of the sufferer is the priority.

I wish you well, it is a terrible situation.

Love,
Jeanne.

 

[Sandy]

Hi Maya,

I have always found it very helpful to read the Alzheimer's Society's position on palliative care, as it offers a balanced view of the issues involved:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=428

These are very difficult issues and completely new territory for most of us.

Try and get as much support as you can from the people involved in your mum's care and I'm sure you'll feel better about whatever decisions you have to make.

Take care,

 

[i-care]

Hi Maya

I am so sorry to hear about your mum. My father went through the same difficulty and the doctors told me that he was at the end stage of his life ... I didn't want to believe this as I wanted him to live but I know it is so difficult and very sad. What Sandy said is good advice and the link provides good information but in th end it is a decision for you to make and "what is in the best interest of the patient, your loved one" ... care at this stage is therefore one of comfort and emotional wellbeing - not of prolonging life.
Being there for them, holding hands, being around them and sometimes saying things about their family and talking to them is good for them and you even though you can't believe that they are listening - they are! Sips of water which helps moisten the person's mouth is good but so is artificial hydration depending on the circumstances. I preferred artificial hydration because i saw my father dehydrated and in need of help. His condition and well being improved after artificial hydration and he lasted 10 days in hospital where he was diagnosed as having had neumonia.
Be with your loved as much as possible and use eye contact and touch. God Bless.

 

[Winnie Kjaer]

Hello Mayo,
I am sorry to read your mother is strugling so much when feeding. I wonder whether she is a stroke survivor?

My husband is and he has that very problem. He was in hospital for 6 months following a very severe stroke and during the first 3 months they used suctioning to clear his tract. My husbands swallow did not improve and in the end we decided to try a peg. He came home with the peg still in situ but gradually with a lot of patience and practice we got him back to a liquidised diet and eventually had the peg taken out. He did contact MRSA in the hole when the peg was inserted and that was apparently quite "normal" at the time. Like Sylvia says other infections are also quite "normal".

My husband has now deteriorated substancially since his stroke and I can honestly say that if the choice had to be made now I would not prolong his life further with a peg. It is a general anestaetic and it took him a long time to recover from that too at the time. Now he would not cope with one at all.

Only you know what is best for your mum, but I would as I did at the time take the consultants advice as to what they feel is in your mothers best interest.

It takes time to look after a peg properly and thorough cleanliness and care is vital to keep the infections abay, all of which needs to be taken in to consideration when deciding what the best solution would be.

I wish you all the best.

 

[Canadian Joanne]

Hello Maya,
Whether or not to insert a PEG is an extremely personal decision. I know what I would do in my mother's case but my personal experience may not be appropriate for you.

My sister and I have agreed not to allow a PEG for my mother but my mother was very vocal all her life about not wanting to be kept alive on a machine. So we felt that she would not have wanted PEG feeding either. Even though your mother didn't discuss that in particular, did she ever express an opinion about people on life support with no chance of improvement?

You say your mother has a way of saying no to food with her eyes. Do you think she's trying to tell you something?

Take care of yourself - it's a very hard time.

 

[Maya]

thanks everyone

Thanks everyone

You have given me alot more information than my GP or SALT and the palliative care team have been very slow in responding I am very disappointed in them.

Thanks again for your advice

xx