Mum is still in hospital and will have one more check on her swallowing ability and it will be decided wether or not she needs PEG.
If this is the case mum does not want it fitting.
Please could people let me know their experiences of this. I want to know as much as possible so I have some idea of what to expect
Hello Sarah. Jackie has MSA but I look at this community as well due to the similarities. Jax chose to have a PEG fitted but this was at an earlier stage and has continued to feed normally as well as have fluids and some medication through the PEG.
I am sure there are many who will give advice in your current situation. Should however you want to look whilst you are feeling strong today there are a couple of posts from 4 years ago within this community that may give you some guidance. You can either search yourself or this is one of the conversations I found:- healthunlocked.com/psp/post...
The very best of luck, I really feel for you. Take care, Ian
Write PEG on the "search PSP Association"....many shares will come up.
Ben never had a PEG fitted, he always refused so can't really advise on the benefit of having one. He didn't want to have his life extended and I think that a very personal thing for each individual. I believe that PEGS don't always prevent choking but again I have no personal experience. Ben died in May only having been diagnosed for three and a half years.
Love Kate xxx
Geoff does not want a PEG and he is now end of life.
I know there will be different and divided opinions on this but I am in the same 'camp' as my husband.
Why prolong a terminal disease when the prognosis is not pleasant?
It is going to be very difficult for you and your family. But, if your Mum knows that she is likely to choke if she doesn’t have the PEG, and will not get what she needs to survive without it, and understands that having the PEG will ensure she will get all she needs with it, although it will not save her life, then personally I would go with her decision.
Whatever her decision, when it comes to the end it comes to the end.
As I said in a previous post, G changed her mind in the last 11 months of her life, and had the PEG fitted, it didn’t stop her eating and I remember the dietician having a fit when she had heard that she had tried some crisps and choked. I had to explain, that whilst G had the mental capacity, it was not for me to say no to her re foods she wanted, she knew the risks.
If it were me, I would like my family to respect my wishes, however hard, and that was something I tried so hard to do for G.
Best wishes.
Hi Sarah,
My sister chose to have a peg tube. She's had it since last December. Prior to going to the hospital, she had horrible choking and gagging. No matter how much I pureed her food, she would get in distress. I abided her wishes even though I would have chosen differently for me. As for her quality of life after getting the peg, she responded well with it, but now her decline is very slow and she's still losing weight. She's down to skin and bones and her muscles are contracting and stiffening. Seeing her like this just breaks my heart. Now, she's on Hospice at home and we're doing all we can do make her comfortable. I don't know how much time she has left, but it won't be too much longer. I don't know if she regrets her decision or not, but I would have chosen differently.
As others have said, do your research under "peg" and see if you find any answers. I pray you find peace with your decision.
Mum saying she doesn’t want it but I’m worried she is saying it because I think it’s best. Things have changed though now as she has been told eating is to dangerous and stressful. At the moment her quality of life is poor but she does still have some quality. I just want what is best and will support her either way, I just don’t want her to agree with me because she doesn’t want to let me down. I’m feeling so selfish. We were told today that she has the peg or she goes home and starves. This is just so cruel and has happened so quick xx
Oh Sarah you must be totally and utterly beside yourself with this stress and worry.
It is such an individual personal decision. Until the time comes to be faced with this decision ,no one can really know what they would decide.
Is there anyone else she and you trust who can talk to her about this as an impartial pair of ears? I always worry that Mum is agreeing to what she thinks I want to hear too.
All you can do is go on what information you have been given at the time and base decision on that.
Is she does go home will they get hospice involved for you now? They should make sure she is comfortable and peaceful in the time left.
Massive hugs to you.
Thanks Anne, I never ever expected this to be so sudden. I just wish that when mum told me she didn’t want to know about the illness that I insisted she did. But would that have been fair? This is so out of the blue for her and she is been so brave. In the hospital everyone saying to get well soon, it just breaks you every time. When the consultant told us I went out for fresh air (cigarette) only to be followed by some bloke who said he knew exactly what I was going through. I just wanted to scream at him that he didn’t have a bloody clue, but instead I just stood there screaming inside whilst he told me his life story and how his mum abandoned him when he was young. My mother does not have a cruel bone in her body, she is nothing like his mother. I’ve been sleeping next to her at the hospital since she was admitted, the drs agreed she could go home for a few hours and she felt free. All she wants to do now is go home, but at the moment she is in the best place gaining strength for her next chapter. She wants to go to London and watch a west end show, and other attractions. I’m worried I won’t even get that right but I will give it a damn good try xxx
In a way is it better for your beloved Mum that is a quick progression. A massive shock and trauma though for you all that this has happened so fast.
My Mum also doesn't want to know the ins and outs but does struggle knowing that nothing can be done. Currently she is really struggling with this and very low.
You have been such a wonderful daughter and staying with her the whole time in hospital.
You can only do what you think is right at a given time. I know I always beat myself up about decisions.
X
Don't want to get our hopes up but was allowed to take mother out for a couple of hours so booked her in at hairdressers. Called at home first to get her dressed. She asked for a drink of water, gave her thickened like she used to have and not one choke ??? Fingers crossed that drs are being over cautious and she is same as when she went in. It's not ideal but it's better than it was yesterday. Hoping she has a few good weeks months. Instead 2/3 bad weeks. At least this time when the time comes we will be better prepared 😁
Will keep all crossed that she is home soon & that family meal is enjoyed x
Even though the doctor told my sister eating was too dangerous, after she got the peg and came home, she still wanted to eat. We did feed her some things, she wasn't going to starve. If she chooses not to have a peg, you can possibly let her have some food. Yes, my sister is going to die, so I want to let her have what ever she wants. Within reason. I always amaze myself that I find ways to adapt things or food to accommodate her needs. Lol!!
Your mom's dr shouldn't have used the word starve. First of all, that was very harsh and not a good bedside manner. Your mother may be at the stage where she's not hungry any more, so there's no need for a peg tube.
I'm sorry, I tend to talk too much. I'm sorry you and your mom are going through this. Sending prayers and lots of ((((Hugs)))).
No need to be sorry, your post is very helpful. I’m just so pleased that she can still eat. I know she doesn’t have long but her favourite thing next to family is food and everything we do/go food is involved. One very big family meal has been ordered by mother as soon as she is home.... for once I won’t mind doing the cooking 😁
My dad (PSP) just had his peg tube placed today. When family met to discuss, it came on the heels of a frantic call from the nursing home saying they would not give him anything by mouth because choking was so bad. He has since rebounded a tad bit and is doing okay with his puréed food by mouth. He will continue with some food by mouth but most nutrition through feeding tube. Family all understands that aspiration is still a risk but because his cognitive abilities are still somewhat decent we/he felt like the best option was to have a peg.
Unfortunately it seems the declines are like going downstairs, one day you are able to do something the next day you can't. It is truely horrible your mom's decline this time has such consequences on her quality of life.
Ron
I’m gutted for her Ron and every other sufferer and carer out there. Just when you think you have a handle on things it all comes crashing down xx
Sadly mum failed her swallow test yesterday. They tries her with juice the thickness of yoghurt. She choked so much she went blue. The choice now is to come home and starve or have peg. The consultant is coming again this morning.
Thinking of you both.
You have been and will continue to be such a tower of support and love for your Mum.
My opinion on terminal illnesses is that it is harder on the loved ones in a lot of ways . We cannot know what the sufferer is truly feeling and thinking in their mind. Having had a few friends now with terminal cancer they all have worried about their family they are leaving behind but reach at some point the realisation of their own mortality.
These conditions are plain evil and we cannot do anything to treat or cure, there is no hope for people to cling on to.
We will never be ready to say goodbye and the pain will be with us forever in some shape or form.
Whatever the decision your Mum makes you will be by here side like you are now.
We are all here for you by your side.
Xoxo
Sarah, there is a difference between starving and dying of nutritional deprivation - the latter is not supposed to be painful or stressful - the doctor may guide on this best
My dad had a PEG pretty late into this life and it was a disaster for him - very poor quality of life, all his suffering and pain and anguish being dragged on for months - it varies from patient to patient but sometimes the choice is between dying early and (relatively) peacefully or a few months and with a lot of stress, pain and injuries (being sedentary also causes bed sores, which can develop over a couple of hours only)
Sarah, I'm so sorry for your and your mum's trials. What a hard and unfair time for you both. I understand her desire to exercise her choice and respect it. We all know we have to prepare for the end when our loved one has this disease - it may be delayed but it is inevitable. So painful. All you can do is love her and support her every step of the way so she knows how valued she is, right up to the last minute.
Hugs to you for this hard time. XXX
Anne G.
Dear Sarah
How lovely to take your mom out to the hairdressers - for most women this is a lovely treat and will have cheered her enormously.
My husband has an advanced directive written 3 years ago expressing no PEG periodically he reminds me. We have weeks where he coughs and chokes on all almost everything and then others when he barely tickles a cough. He is on thickened fluids and softer diet but I try to give him ( within reason ) whatever he fancies on the good weeks. I wait for the chest infection- but his night time COAP seems to keep his lungs clearer.
It is such a horrible illness and I feel your pain - you have been an amazing daughter . Hope you will still have more good times for the memory bank
Sending love and hugs
Xxxx
