peg feeding

[cariad]

Hello everyone,
I am after advice please. My mother has frontal lobe dementia and MND. She is 65 years old. Although severely cognitively impaired, she is still mobile and can do some simple tasks.
Swallowing/choking has become a problem (because of the mnd which is most obvious in her cheeks/tongue/neck). She is not even tolerating a soft food diet very well. The neurologist has recommended a PEG. Now my mother is not end stage with the dementia bt I don't feel that a peg is appropriate when she has a progressively deteriorating condition (well two). It seems almost cruel. I am sure my mother wouldn't have wanted artificial feeding (when she was of sound mind).
The neurologist said that mnd can last for years and that muscle paralysis is not a given in all patients. I would rather let nature decide when it's my mother's time and avoid the suffering that we know is in store.
My mother was living a completely independent life 20 months ago. Now she needs 24/7 supervision, is almost mute, can't understand a conversation, is faecally incontintent from time to time, suffers delusions/paranoid thought etc).
Please could I have your opinions. The neurologist seems flabbergasted by my reluctance to have a peg for mam. What would you do? What would you want for yourself/your loved one?
Thanks in advance, Berni x

 

[christine_batch]

Dear Berni,
Although my husband is in the last stage of AD and only 62 my personel view in knowing my husband's reaction pre-AD, I would not allow PEG feeding.
The stress the loved one goes through - trying to take out tubes etcetera, I would prefer Peter did not go down that route.
My husband is already a vegetated state and has a very bad hernia that needs operating on but Surgeon will not carry out the operation due to Hospital staff not being able to cope with a AD patient.
In my personel opinion, Surgeons, Doctors,, Consultants see this as the easy way to treat.
I wish you well with a terrible situation.
Christine

 

[Grannie G]

Hello Berni

I feel some people hold the belief life is sacred no matter what quality, and some medics use seriously ill people as guinea pigs.

That is my opinion only. I am not representing anyone but myself by saying it.

I would not like the responsibility of influencing you either way, but I think you know in your heart what your mother would want and I feel you want the same.

What I do know from just one experience of peg feeding is, if an infection develops round the incision , it is extremely difficult to clear it, in someone who is in poor health.

Take care xx

 

[Canadian Joanne]

Hi Berni,
This is such an emotionally difficult decision. I haven't had to face it yet but my sister and I have already decided not to peg feed, if the situation should arise. This decision was easier for us because my mother had said many times when she was well that she didn't want to be on machines at the end. So she actually made the decision and we are carrying out her wishes.

I too would rather let Mum go naturally, as opposed to using all and any methods to keep her hanging on. For what? My opinion is that it prolongs dying, not living.

You know your Mum best and whatever decision you make will be the right one. Never mind what the "experts" think. That neurologist can be as flabbergasted as he likes. It's not his mother.

 

[Sandy]

Hi Berni,

I can't offer anything really, but do feel that it is important to distinguish the PEG option as it relates to dementia compared to the progression of Motor Neuron Disease.

The Alzheimer's Society's guidance on palliative care is here:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200167&documentID=428

The point is made in that document:

When people in the late stages of dementia experience great difficulty with swallowing, most people accept that this is part of the dying process and that the most appropriate response is palliative care.

Is your mother able to express any wishes on this point at the moment? If she knew that she had MND, why do you think she took no steps to document her wishes in advance?

You might want to take a look at the General Medical Council's guidance on withholding life-prolonging treatments:

http://www.gmc-uk.org/guidance/current/library/witholding_lifeprolonging_guidance.asp

The MND Association also has a (PDF format) sheet on PEG feeding:

http://www.mndassociation.org/search_clicks.rm?id=20&destinationtype=2&instanceid=110194

It doesn't talk much about making the choice, just that the person with MND wishes should be honoured.

Take care,

Sandy

 

[alfjess]

Hi

Sorry to be so ignorant, but what is mnd?

My mum and dad have dementia and I don't want them to be peg fed, if and when the need ever arises.

I think pallitive care is the kindest option, but then again I don't know what mnd is??

Alfjess

 

[citybythesea]

Mom progressed very quickly also. Your neurologist has one opinion you have another. I never had to broach this subject and am thankful I did not, but I wonder if your mother could handle having a peg inserted. My mother was living a completely independent life 20 months ago. From what you wrote:


Now she needs 24/7 supervision, is almost mute, can't understand a conversation, is faecally incontintent from time to time, suffers delusions/paranoid thought etc).
Please could I have your opinions.

....and mind you this is only an opinion. ....suffers delusions/paranoid thought....would SHE be able to handle having a peg? Perhaps a consult with a doctor who specializes in her dimentia is at best. He/she may be able to shed a better light on this. I know I may not be of much help..but I think thats where I would have started had I been in your position.



HUGS


NAncy


PS...both sides of the coin will not be easy.

 

[Christinec]

Hi Alfjess,
I think MND is Motor Neurone Disease which attacks the muscle system and causes paralysis. It is progressive and although I think it does not affect brain function until very late in the day I could be wrong. MND and AD together must be very distressing for the sufferer and the family.

Hi Cariad,

The following is only ramblings as only you can know what your Mum would have wanted.

Today coincidentally due to thinking about this after reading TP last night I asked the care home whether my Mum has a DNR on her Care Plan. It is not my decision but my fathers as he is next of kin. At this point there is nothing on her notes but I know that she has had enough of her life. Nearly ever time I have seen Mum for the last 3 or 4 years she tells me she wants to die.She told me this tonight again when I visited. I told the manager that I thought Mum would not want any intervention and hope that she will keep this in mind even though it is not my decision. But my Mum is nearly 90and as she says she has had a long life.

Would I find it much harder to be so sure about this if she was younger? My personal view as I head toward 60 knowing Mum's Alzheimers has some genetic component I am quite clear that if I develop AD I will not want any medic striving to extend my life in any way unless a cure is found. But that is my personal view. Surely the whole debate has to be about quality rather than quantity but as another poster has said this is such personal decision and only you can know what your Mum would want.My Mum has made her views very clear to me despite her illness.

Also I wonder whether have you spoken to anyone at the MND Society about this as perhaps they can give you good factual infomation about MND? Can you ask to see another consultant for a second opinion. I see that Nancy sugests you also talk to the dementia specialist about this and I think that would be very good idea.


I am so sorry for your situation. My Mum has been ill now for at least 10 years so I have had a long time to think about this and you and your Mum are so young and it has all happened so quickly that it must be very hard for you. My Mum nearly died in her late 60's before the dementia was obvious. Now I sometimes wonder whether that would have been a blessing for her and us but if she had died then she would have missed the birth of both of her beloved grandchildren. She stills recognises them despite her illness progressing.

Wishing you all the best.xx

 

[cariad]

Thank you all for your input. This is such a hard decision that I wish I didn't have to make. I think it is best not to Peg feed but to allow mam's body/mind to decide when enough is enough. She had the MND after being diagnosed with fronto temporal dementia by the way.

 

[puddin'ead]

Bless your heart Cariad.
I have nursed many people over the yrs who've had a PEG inserted, and witnessed and treated infection sites. I'm not saying they're a totally bad idea. In the right circumstances where the outlook is positive, subject to it's installation, care and management; it's an excellent choice.
I know my parents wouldn't want this or any other well intentioned & like minded intervention for them, hugs, puddin'ead xx

 

[puddin'ead]

Bless your heart Cariad.
I have nursed many people over the yrs who've had a PEG inserted, and witnessed and treated infection sites. I'm not saying they're a totally bad idea. In the right circumstances where the outlook is positive, subject to it's installation, care and management; it's an excellent choice.
I know my parents wouldn't want this or any other well intentioned & like minded intervention for them, hugs, puddin'ead xx