PEG tube feed update

[ManjiB]

Continuing the discussion from PEG tube Feed Duration Update:

Hello - I thought I would give an update on the topic of PEG feeding. Mum has been on a PEG feed (nil-by-mouth) since she had her stroke over five years ago. There have been many ups and downs during this period and it has been a lot of [continuous] learning for us. Our experience is that this condition is not well understood or supported at least in the area that serves us. The specialist doctors and nurses have a limit of knowledge beyond which they are unable to support or advice.

For example, after the tube got blocked and with a “buried bumper” situation we had to go to the hospital, we have been told by the specialist that nothing could be done and he suggested the best option (his recommedation) was to do nothing i.e. leave Mum on drip feed with no feed or water by mouth or the PEG (blocked). After much push back, he eventually relented and we were given a solution (an inner tube inserted into existing tube).

Thankfully, the procedure was a success (it is over a year since this took place) and as always with the ups and downs we have managed to keep Mum fed and watered (and medicated as required) via the PEG.

In summary, despite many things not done as per text book and even though the tube should have been replaced before it got “buried” Mum continues her stroke recovery and “against all odds” she is in good health.

Now the thinner inner tube is prone to blockages, but we have been shown a way to reduce the risk of blocking and also to unblock it without having to go to A&E. Hopefully, with this current solution and with Mum remaining healthy we will not have to visit the hospital ever again. The hospital is keen for us NOT to go back. In recent visits they have been keen to send us back asap even by doing the absolute minimum or not addressing the concerns we have saying “the hospital is not a good environment for Mum”. It is not something we choose to do i.e. we go to the hospital as a last resort or when the GP decides that they cannot do anything and want to pass the buck and send us to the hospital.

Our message is that do not give up, do not worry and living with a PEG is doable (is that is a word).

Best wishes to all.

[Mrs5K]

@ManjiB great to read your update & hear that your mum is doing well. It sounds like it’s been a bumpy ride but you’ve learnt how to deal with those bumps well.

The hospital probably isn’t a good place for your mum but it’s hardly somewhere that we choose to go unless necessary.

I hope things continue to improve.

Best wishes

Ann

[ManjiB]

@Mrs5K

t

Thanks Ann.
Peace & Love.

[Susan_Jane]

Hi and thank you for the update? Glad to hear that your mum is in good health despite everything she has been through and the problems she has had with her tube feeding. She sounds like a very strong determined lady. Sounds like you are also strong and determined in helping your mum along her road to recovery. Well done to both of you and I hope her recovery continues.

Regards

Sue

[ManjiB]

Hi @Susan_Jane ,
Thank you for your supportive message.
The early weeks and months and years were the most challenging. It did not help that the Covid shutdown further restricted the help and support we could get from 3rd parties.
Mum is incredibly strong both mentally and physically. It is her willpower and desire to live that has pulled her through. Despite being dependant on two carers for her most needs, at no time has she shown signs of feeling sorry for herself and despite having aphasia so that she only makes sounds rather than words she has the determination to get the help she needs.
Oftentimes we think she may have plateaued or worse when she ends up in hospital, but she comes back fighting and stronger.
Now when we look at her, we know she is going to keep going and she is determined to get her card from His Majesty King Charles III (she had hoped she would get it from Her Majesty Queen Elizabeth II).
She is truly a wonder of the world and I have a feeling she has more surprises in store for us.
Both Mum and I are very fortunate in that we have excellent support from our extended family and I ama grateful to have one of my siblings helping out with Mum’s care.
Thank you once gain for your supportive message.
Manji B.

[ManjiB]

Hi Sue,

@Susan_Jane , I missed the question mark in your response to my post titled “PEG tube feed update”. I first wrote about Mum’s PEG feeding back in July 2022 and this latest update was meant to be a continuation of that, hence the “PEG tube feed update”. The link to the post is at the start of my message and I include it here - not sure if this will work as I am not an expert on how this forum works.

@ManjiB

Continuing the discussion from PEG Tube feed duration :

I visit this when I can to either help others by sharing my experiences or to find help myself. I signed up about five years ago and have been popping in as and when.

I hope that clarifies what this is an update about.

Take care.

Manji B.

[EMG72]

Late to this thread but wanted to say well done to your mum and you. Determination seems to be the key in life post stroke.
My mum had a massive stroke last Feb and is now moving her paralysed leg and showing more improvement. She’s got a PEG and her SLT is planning on a swallow assessment. But the constant risk of aspiration pneumonia looms.
Is this an issue your wonderful mum has dealt with?

[ManjiB]

@EMG72 , it’s never too late to read / join a thread

Thanks you for engaging. Mum, myself and my sister have done really well to be where we are today. I think you have seen some of my posts on this forum and noticed similarities in you and your Mum’s situation to ours.

My Mum had her stroke in March 2019 and so it is almost six years. I won’t repeat the whole story but I will say that the initial response from the experts was not very helpful or encouraging or supportive. To put it bluntly we were told there wasn’t going to be much improvement (totally bed bound) and nothing was offered. But we noticed that whilst lying in bed Mum was still fighting, unable to commnicate normally but not willing to give up or be given up on

We listened to what we were told and we asked questions and importantly we asked “Why?”. Also, we always said “But Mum is not your average octogenarion” and kept pushing back on suggestions we were not happy with or where we felt Mum was not understood OR being treated fairly i.e. not being pigeon-holed and discrimated due to age rather than condition.

As a result instead of being discharged after a week with nothing can be done, she ended up staying in hospital for 3 months with a couple of failed discharge attempts whereby she picked up infections.

Despite the stay in hospital she wasn’t getting much help as she was not seen as a patient who would “benefit”. Also, in our case, language was a barrier - Mum’s native tongue is not English and so we always had to translate and we didn’t know how her mental condition was after the damage the stroke had done.

Untlimately, she left hospital with a PEG tube, double incontinence and in need of double up carer support.

The DMT weren’t helpful - their primary objective was to get Mum discharged. The fact her home was not ready for her in her new condition did not matter. They also suggested a care home might be best for her as it would be difficult to look after her at home.

We just pushed back but there is so much you can push back on before you have to concede.

We brought her home as was her wish - something we had discusssed when she was well

I am conscious this is becoming disjointed and I think I will stop before it becomes unreadable.

Specifically @EMG72 ,

• Your Mum seems to be doing as well if not a lot better than my Mum was doing at a similar point in time.
• Her moving her paralysed leg and showing improvement is fantastic
• Her being on the PEG feed is fine as long as she is comfortable with it . Hopefully the SaLT’s swallow assessment will give some further guidance.

It may [or may not] surprise you to know that my Mum is still on a PEG feed and the SaLT has never been able to sign her off. I must say, that in our opinion, the support we have had on this front has been very poor. The SaLT has been possibly the weakest link in this team.

We have tried to follow up but on each occasion the session ended negatively as Mum was not able to “pass the test” in the window she had. Our observations are that Mum is swallowing fine and she has never aspirated once. We have been very careful to make sure she has always been in the right feeding position to reduce the risk of aspiration.

We try to give her some water (that is all SaLT says we can give her). But again after the length of time Mum has been nil-by-mouth we are in foreign territory here. The whole experience has been a massive challenge and we keep living and we keep learning.

So in summary, Mum is on PEG feed and REFUSES food when offered. She has never expressed any desire for food or drink (her aphasia and comms is another grey area).

Her community dietician has been a godsend - extremely helpful and supportive. Mum’s weight has been pretty constant, though she invariably loses weight in longer stay hospital visits as the nurses can’t cope with her fine-tuned feeding regimen.

We, or specifically Mum is determined to live as full a life as she can and as at today, she still requires double-up carer support, but she is on no medication other than a low dosage blood thinner (asprin). She gets some physio from the family and she sits out in a riser recliner and in her wheelchair for up to eight hours a day.

I am sorry if I haven’t answered your question, but please persevere and I will do my best to share our experiences and offer support if I can.

Wishing you and your Mum a happy and healthy new year.

Peace & Love.
and

[Mrs5K]

@ManjiB it is great to read how far you have come with your mum. So much better than anyone ever gave her credit for. Much hard work & determination on all your parts for aure but it does show that if someone ia veey determined then great things can be achieved. Of course, there’s always an exception but your story will guve others much hope.

Best wishes

Ann

[ManjiB]

Thanks Ann @Mrs5K ,

If anyone can get hope from our experiences then that is all we can hope for. We very much like to share anything that may help anyone in anyway.

We came in this and were thrown in at the deep end and at times it felt like we were sinking but collectively we never gave up and within reason we never took “No” or “Not possible”. Bottom line is always we and onky we know how we feel and what we might be capable of. Then if we can get help, that’s great - all help appreciated. If no help is available, we work on it and find our own solution. It’s not easy, sometimes it takes a bit of lateral thinking but in the main we come up with something.

Today and everyday we look at Mum and think “Wow, how does she manage to look so good after all she’s been through and still continues to experience today?”. It gives us incentive to carry on.

We are lucky also inasmuch the siblings are willing to help out as best as they can and so it is not one person taking all the hit.

Always look on the bright side of life …

Peace & Love
and

[EMG72]

Thanks so much for taking the time to respond so soon

It’s very galvanising to hear about your and your mum’s experiences in an area of healthcare which is more or less ignored by the NHS. As you said in your comment on my post the other day the NHS isn’t best placed to help stroke survivors.

You hit the nail on the head and it is crazy that our health system does not have the knowledge / resources to support people. I have been very bullish indeed with all NHS workers involved in my mum’s care and will not take their opinion on face value.

Similarly, I’ve always asked ‘why’ - unless I was too exhausted to do it. Sometimes, I just don’t have the energy. But I usually circle back round to challenge that person another time.

It sounds as if you have pushed so hard and constantly for your mum. She is so lucky to have you and your sister. I do it all myself. I have 3 brothers but they’re not as engaged or as proactive as me.

I’m finding increasingly that the ‘experts’ in hospital were pretty clueless in terms of their prognosis. They were cruel. They could’ve given us some simple advice upon discharge which would’ve make mum’s life a lot difficult. This attitude is nothing short of cruel. I have little respect for the consultants on the ward. Why save someone’s life only to chuck them out without providing the family with no helpful advice?

I’m impressed that your mum isn’t on meds apart from aspirin. That’s very good for her overall health.

It’s not ok that SLT aren’t that supportive of your mum. Have you looked into private SLT clinics? I appreciate it’s another expense and they’re few an far between, but they do exist. Can you do a PALs complaint or go to their boss?

Our local MP has taken on mum’s case - she’s putting in calls and trying to get to the bottom of the diabolical attitude of the council and NHS. Might be worth emailing your MP?

Did your mum have to deal with aspiration pneumonia at all in the months or first year after her stroke?

Happy new year!

[ManjiB]

Hi @EMG72

It seems to be we are pretty much on the same page on terms of what happened to our Mums and how they were subsequently supported [or not].

From what you say I am confident you have everything in control and I am very impressed how you have achievee this pretty much on your own, with your brothers not as engaged or proactive as yourself, so well done on that. If I may, I will say please do take care of yourself as it is important you remain healthy and happy in order to continue providing the level of care your Mum requires and that you would like to give.

Medication
On the note about Mum being only on asprin, this is because prior to the stroke she did not take prescription meds – only herbal and homemade remedies for any ailment that might have been identified. However, during her stay in hospital, because of the way they work and how she was looked after, she became:

• Diabetic
• Blood pressure increased.

As a result she was put onto insulin and blood pressure reducing medication and this was to be continued as part of the ongoing care post discharge to home.

What we did not know was how thus was affecting her finely tuned body/physiology as was pre-stroke. We did question why she was on these meds, but the GP (who was now in charge) told us it was necessary as preventative medication to prevent another stroke. We were not happy but did try on several occasions to get these stopped. Luckily for her, the diabetic nurse agreed with us that there was no need for Mum to be on insulin and after monitoring and blood tests to confirm, the insulin was reduced and then discontinued – Good win for Mum.

The blood pressure medication continued and GP insisted it continue. With Mum not able to speak and confirm, we [reluctantly] followed the guidelines. Well, Mum was having epileptic fit seizures and we not having a clue ended up taking her to A&E. This happened a few times and the hospital had put her on some medication for the fits. Again we refused (due to side effects that might happen – we decided risk was not worth the reward). On one of these visits to the hospital, it was discovered that Mum’s sodium levels had fallen below acceptable level and so this had to be addressed. I can’t remember exactly how, but the consultant asked what medication she was on and so we mentioned the blood pressure medication – we were told to stop it immediately! We kept telling the GP but they would not listen, but now, the hospital consultant has done it for us. We are very happy now because Mum is only on asprin.

­­So that is how Mum is only on a simple low dose asprin and totally healthy with it.

SaLT and MP etc
Wrt your suggestion about SaLT, we have pretty much given up in that because we now feel it is not as simple as we might think [for Mum – each person being different]. We were never happy with the SaLT part of the care but concluded there was not much point on “flogging a dead horse”.

We have not yet contacted the local MP, but we did escalate and lodge a complaint against the council’s social services team and how the social worker dealt with Mum’s case. It was a waste of time as they “swept it under the carpet” after “apologising” and again we said “let sleeping dogs lie”. But we are fully aware of Mum’s rights and if it comes to it, we will always escalate as needed.

ANSWER to your question:

@EMG72

Did your mum have to deal with aspiration pneumonia at all in the months or first year after her stroke?

No Mum never aspirated – we were ultra-careful and made sure there was no way Mum could get aspirated. It helped that in the early days (when risk is highest) her mobility was low due to the stroke related paralysis etc. Today she is more mobile and more aware and more demanding and so it is difficult at times to feed her. But we [and she] know what is required and we get there in the end.

Key challenges in first year:

• Feeding – duration and timings
• Epileptic fits (seizures)
• Cognition and keeping Mum from falling out of the tilt and recliner chair
• UTI infections (as a result of permanent catheter that was fitted) – again the catheter was an issue that took a long time to resolve and it caused many problems including UTIs and “popping” out, carers dislodging it during care, DNs not coming in timely manner to change it etc. This was one of the bigger headaches we had, but thankfully it did get resolved eventually
• [Lack of] physiotherapy.

There is much more to our story but I am pleased to say we feel we are well placed for successful ongoing care for our dear Mum.

Peace & Love
&

[EMG72]

Goodness, your mum’s story really resonates with our own experiences. I’m so sorry to read about your mum’s seizures - have they stopped?

And huge well done to you too. It’s good she’s off those meds and that you can support (eventually) for that. What a journey you’ve all been on.

Thanks for the advice on looking after myself. I’ve just taken one month of work (being self-employed I can do that) - it was the first break of any kind I’d had since Christmas 2023. It was literally non-stop, working around my mum’s needs, 7 days a week and evenings.

I’m glad you mum never aspirated. My mum aspirated for the first time after the hospital allowed her to chug down tea unsupervised and eat the level 4 diet (the pureed stuff that no one likes). She then had aspiration pneumonia in early autumn (due to lack of movement of the lungs/ muscles due to the stroke), which was cleared up with antibiotics.

This is why we’ve had to get a private respiratory physio involved. It may help. We’ll see.

She’s been on antibiotics one and off since infections (UTI a few times as well as pneumonia) since last spring, which isn’t good. I’ve introduced probiotics to support her gut and immunity and currently looking at other supplements.

*Does your mum have a naturopath or other practitioner? I’m looking for someone who’s experienced with complex needs. Open to recommendations

My mum’s on other meds for high bp, hypothyroidism (mum’s long suspected the thyroid meds increase bp, but the doctors aren’t interested in investigating this issue).

There was a medication review before Christmas, but it was literally a quick run through mum’s prescription. We didn’t want to rock the boat after a very turbulent year so nothing has changed.

I’m getting to the point where I feel we have the wrap around care she needs. But I’m also realistic about her prospects. I hope to be pleasantly surprised.

[ManjiB]

Hi @EMG72
At the risk of making this a difficult post to read/follow, I will attempt to address points raised in your last post. Perhaps it might be more benefical for other memmbers of this forum if the sub-topics are dealt with in separate posts e.g. Seizures, Time for yourself as a carer etc. Here goes …

SEIZURES

Mum’s seizures stopped and as best as we can tell she hasn’t had any follow-on mini-strokes – I think I may have mentioned in my long winded posts that we discovered Mum’s sodium levels had dropped below the minimum level for healthy body, and the hospital consultant told us to stop the blood pressure medication that Mum was on at the time. Electrolytes are important for good health and sodium is one of these. It is our belief that the blood pressure medication caused the sodium level to drop. In addition, Mum gets water (via the PEG) and the daily level of fluid (including liquid feed – Mum is in Ensure plus and Ensure Fibre) is ~1500 ml. It’s possible that during a hot spell when we are told we should up this to make sure Mum does not get dehydrated, she may have had too much water and the sodium level dropped as a result of the water washing it out.

To address the sodium issue, our [wonderful] dietician told us we should add a half tea spoon of salt to her drinking water so that the sodium level is maintained. Since doing this, in the main Mum has been find and has had no seizures.

TIME FOR YOURSELF AS CARER

Glad and please you have taken time out to look after yourself and recharge your batteries. Alas, my sister and I have not done this as based on our experiences we don’t feel confident in ability of community care workers to look after Mum for even a week. Even with two of us, it is very difficult and now we are beginning to feel the effects of the drain this is having on us. Mum has never been left on her own i.e. without me or my sister available for her if she needs help. So for 24/7 she has been in “safe hands”. Even when she been admitted to hospital, sometimes for a few weeks, we stay with her. Hospital stays are stressful as we don’t have the control of Mum’s care plan as rules of hospital in-patients take precedence. This is one of those occasions when it is “Do as I say and not as I preach”. I always tell people to look after themselves as they cannot look after others if they themselves are not fit enough.

ASPIRATION

I am glad your Mum’s aspiration incidents were cleared with antibiotics. We have, and still do take precaution to prevent this and so far we have managed to prevent an incident.

ANTIBIOTICS

Mum has had to take antibiotics for various ailments including c-diff infection (whilst in hospital), PEG site infection and UTI. We try to avoid these as there is a risk she becomes immune and they become ineffective. We make sure ALL visitors always wear face masks as a precaution against airborne viruses.

This is why we’ve had to get a private respiratory physio involved. It may help. We’ll see.

UTI – Mum was fitted with a permanent catheter and we believe that long term use of this and associated difficulties with personal hygiene was the reason she got UTI infections. It took us a long time to get her taken off the permanent catheter, but thankfully, an opportunity presented itself during one of her in-patient visits to the hospital and we took advantage if it. The catheter was taken out and Mum was fine without it, so it remained out and to-date she has not suffered from UTI (that we are aware of). So slowly, but surely all foreign “bodies” have been taken out of the equation. Unfortunately, as mentioned when I updated this original post, the PEG will remain a “permanent” fixture L.

We did try probiotics (actimel) but due the volume of fluid Mum is allowed and no proper evidence of its benefit to Mum we discontinued its usage. Your Mum’s dietician should be able to better advice based on her personal health condition.

NATUROPATHY / SPECIALISTS

We have not been able to get help from any specialist Neuros (consultants, physios etc.) We tried, but no one is brave enough to take on Mum’s case (they see her age and length of time without specialist care as prohibitors).

We approached Reiki practioners as but they also failed to take on the case after meeting her in person.

In the main, my sister and I and whatever we can source e.g. from the internet (risky) is how Mum gets looked after. Sometimes we just think laterally and try things e.g. we bought an exercise “Walker” to help her get in some steps/movements and a Revitive Medic to improve circulation. We are so surprised no professional has suggested this similar aids. They tend to be reactive rather than proactive. Even then, more often than not it tends to be a “token effort”.

So I can suggest nothing for you here – sorry L

YOUR MUM’S OTHER MEDS

It seems your Mum is able to communicate and so she tell you/specialists how she feels. I can only suggest you persist and request your GP to refer you to a specialist or get a second opinion. You may be able to do research of your own and go to them with a suggestion – sometimes doctors need a little “guidance” – that is how we got Mum off her insulin, blood pressure medication and catheter. We talked to several members of the care team and collectively the information was built up and suggested that Mum didn’t need the insulin or the blood pressure medication and she would be better off without the catheter.

See if you can “encourage” your GP to help you J

ROCKING THE BOAT

If there is any medication that is being prescribed that you feel is no longer necessary, you (your Mum) are/is well your rights to ask to be taken off it. Now is a good time to do a review and see how Mum’s condition has changed and what needs to happen to her care plan to reflect the current condition as was. Rocking the boat is fine, as long as you do it carefully. Sometimes we have to give a gentle nudge.

An important thing to mention here, is that we ALWAYS read the medication leaflet and especially the side effects. With Mum not being able to verbalise, for us it is important we look out for signs of side-effects so that medication can be stopped before things get bad.

REALITY

What is reality? Who knows? How long do you carry on before you concede?

Speaking for ourselves, we were told over five years ago after the stroke had happened and the clot buster and subsequent attempt to clear the blocked artery by a specialist consultant [at a specialist unit that Mum was taken to after the local hospital had found the clot buster did not work] to be realistic and on many occasions “The family has unrealistic expectations”. Our view is the expectations are real for us. They are real for Mum and we have always maintained that, and that is why we are where we are today J

Just to finish, all information in this post and experiences are based on our experiences and they are not necessarily recommendations since every case should be looked at based on circumstances related to it.

Peace & Love
&

[John04]

Thank you, I’m a little slow at reading posts, but trying to learn a little about others on here, I’ll try to catch up and I wish your mum and you the very best. Kind regards John