Psp, peg, swallow
Hi, has anyone else had a problem with nur... - PSP Association
Hi, has anyone else had a problem with nursing homes pressuring you into getting a peg fitted, and saying she may be asked to leave if not?
Written by
sodthis
To view profiles and participate in discussions please or .
11 Replies
•
Hi sodthis!
These are our informations about PEG:
We have not experience, but seems having a PEG fitted does not make the problem go away totally, as he can still choke on saliva.
“Hi Caya” wrote:
“If the PEG tube is appropriate it depends on the patient:
If the patient has a good quality of life, which means they can walk, watch TV, go to the mall, read the news, to friends etc and suddenly lose the ability to eat and drink then could be OK..
But if the PSP is already advanced and they are fast failing, then it's not recommended since it's just prolonging their misery
Please to search for "peg tube" on PSPA fórum or others for other people's opinions
One caregiver wrote: My dad had one and i would never recommend it for a late stage patient (it wouldn't make their PSP better or improve their cognition etc).”
Hoping to be useful.
Hug and luck.
Luis
My husband was proactive and has in his “directive to physician end of life care” that he does not want a feeding tube. I now think we did not know the correct terms should we have said PEG?
Ridiculous! Do not be pressurised. Advance directive can specify what you do and do NOT want . Get your mother to make one if she is still able to do so.
An Advance Directive is vital and can be drawn up by the PSP sufferer's attorney and I would advise activating a LPA asap. Get advice from the PSPA Helpline. My husband is back home [ that was a fight! ] after a month in hospital [ with a chest infection, a fractured hip ...he fell out of bed in hospital despite being warned of the possibility and then another chest infection.] and is in the advanced stage of PSP. He / with support from myself and our daughter is down on his care plan as RISK FEEDING but we had to fight a lot of pressure from various professionals to put in a PEG. We checked out the pros and cons and I totally agree with Louis and Epsilon. He has always enjoyed food and all his other pleasures are quite rapidly stopping. He requires supervision one to one while he eats [ pureed food but " real" food } , being urged to slow down, take smaller mouthfuls, pause, breathe, sip some water etc. and it takes time but we hope to carry on adapting and helping him like this to the end. PSP doesn't end well and if he dies of aspiration pneumonia, well, he knows that is a big risk. We all know that he is in his last months. He has stated that he does not want to go back into hospital [ unless he breaks a bone! } and after a big fight by my daughter mainly, we have Fast Track CHC Funding with 24 hr care [ to be reviewed in 3 months. ] As a family we've had to search out so much info for ourselves. Our experience is that one does not get told the full picture at any point on this journey. Emotionally very, very exhausting but we are his advocates and mouthpiece. Sorry this is SO LONG but we feel pretty strongly about this issue [ among others. ] Hoping it is helpful to you. Sending you best wishes etc.
Many health professionals UCL as Speech and Language Therapists strongly advocate for PEG feeding, I think because from their perspective it lessens the risk of choking. For me it’s simply shifting the problem from one issues to another - PEG can also result in serious infections, not to mention impact and loss of sensory pleasure still to be gained by someone with PSP from taste. Talk to your loved one, ask why they want and be prepared to fight back!
This seems to be where I'm at with my mum. They surely just cannot make you have a medical procedure to suit themselves. There has to be a choice. We are back to the peg discussion after thinking we'd resolved it. Funding discussion is a joke, I am supposed to have been having this discussion since last October and still chasing it. After arguing since before Christmas for a specialist nurse we finally saw her this week. First thing she mentioned was the peg. Mum didn't want it at all and although takes an age to eat a meal she is managing and food is just one of the last things she gets enjoyment from. We are also at risk over not following the guidelines for SALT but she hasn't had any chest infections so we are applying common sense.
I just have no idea about the peg now or what to do. It's all a real struggle. I actually got a letter of apology from the speech and language today after we got a letter regarding mums swallow last month and then a paragraph the end saying we had a specialist nurse engaged and appointments were planned and had taken place.
I couldn't believe it just covering their backs we hadn't even had a phone conversation with the specialist nurse. They told me it was for Parkinsons.
I was too exhausted to challenge it but then I thought how disgraceful it was and how it looked as neurologist and gp practice were copied in.
Nothing is simple and has been made a lot harder by healthcare workers looking at their budgets rather than patients.
Thankfully there is a wonderful social worker who has become involved and is following everyone up now as mums care was apparently adhoc.
Sorry for the rant.. and sorry for anyone who read this moan to the end.
I have heard of it happening. Part of the reason they give is convenience of the staff. It takes FAR less time to pour a liquid meal in the PEG than to feed someone by hand. Another reason they often cite is that it is less likely for someone to aspirate. While true to some extent, it is the mechanism of swallowing and slowness/inability of closing the little flap that covers the lungs, that cause things to go into the lungs. Removing food and liquid from oral intake will not prevent aspiration. Mucus phlegm and saliva may still find their way down. While there are medications that reduce those secretions, they won't totally stop.
It is true that feeding my PSP husband took too long for the nursing home to feed him properly. He lost weight and that allowed me to get compassionate care during Covid and I fed him twice a day in the nursing home for months until he passed in February.
So sorry for the loss of your husband, sending lots of love xx
When my husband was at the same stage in hospital I said firmly that he didn't want a peg and that I and all the family agreed. We wanted him home with support from them. The doctor talked with me to clarify that I understood the implications - excellent and sensitive. All was organised efficiently. I was feeding him at home so controlled his eating. No regrets. Jean
