Getting a PEG tube - psychological setback - PSP Association

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Getting a PEG tube - psychological setback

Tukan profile image

My mum has had PSP for 6 years now and I'm finding discussions and experiences shared on this forum very relevant and calming for me. Mum does not need a PEG tube yet but our doctor says we should get one inserted this summer whilst her swallowing reflex is still OK-ish. She is beginning to take longer to swallow and eat and will sometimes have choking bouts. She is very unkeen on having this though and it seems to have a huge psychological impact on her - to the extent she failed to even walk yesterday when her physio tried to make her walk. Has anyone had similar experiences with semi-advanced PSP patients? How can we reassure/help her? Any ideas will be very helpful.

16 Replies

I think with my dad he started to give up, you could tell he had had enough and refused a peg. At times he became very stubborn but I’m not sure if that was the disease too.

It seems that you have a proactive doctor which helps the situation.My husband,John, died early 2020 after probably 5 years struggling with PSP.

I am currently mid complaint with the Health Service Ombudsman after the GP made a referral ,with my husband’s agreement , for a PEG. Nothing heard, no news, then told that there was a waiting list. Weeks later, John dehydrated and admitted to hospital. The medical registrar apologised profusely as it appeared that the gastroenterologist had conferred with a neurologist, not my husbands Consultant, and decided it wasn’t worth doing. GP not informed nor family, no further action. John died 2 days later.

So keep communication open with your doctor, and wonderful that you and your mum have that support.

Early on we filled in Anticipatory Care Plan NHS document and wrote no tubes so there was never any debate.

My husband was adamant that he didn't want a PEG. We had a visit from a dietician who persuaded him to have one. However, he wasn't happy about this decision and we reversed the it and cancelled the appointment. He was a twiddler, and fidgeted with anything attached to him, so that would have been a risk with the PEG.It is up to the patient, if they have mental capacity. If they do not then those who are named as guardians in any Lasting Power of Attorney. Failing that then it is up to the medics. Please listen to your Mum's wishes whilst accepting that it is better to have a PEG fitted earlier than later.

I don't think my husband ever regretted his decision. He accepted right from the initial diagnosis of PSP what the inevitable outcome would be. He had a good life and we'd been married for over 50 years. He died peacefully at home with me by his side.

I hope this helps you, keep on keeping on

Anne

Our health Trust's Specialist Dietician came to our home and explained the pros and cons of having a peg with my husband. She showed him the equipment and explained how it worked. Following this meeting he made the decision not to go with peg feeding.

If your mum could access a similar consultation it may help her come to an informed decision, to have the peg or not.

If your mum decides she doesn't want peg fed, I'm afraid you will have to accept her decision, difficult as that may be.

Also this could be an opportunity to discuss with your mum what her wishes are for her future care and draw up an advanced care plan. I did this with my husband and yes the questions on medical intervention in certain circumstances were hard to ask but at least I knew what his wishes were and was able to carry them through, which has given me some comfort.

Lots of love, Nanny857xx

My mom initially went back and forth on a tube. And her doctor did suggest we have one inserted early but when we went for a consultation w the gastroenterologist he was not in favor of it. Soon after my mom said she didn’t want one because at that point her life would be extended only a short period. She refused one and when swallowing became too difficult, she just gave up. She gave up eating and drinking altogether and we had put her on hospice. Their policy is no PEG. She died very peacefully and on her own terms.

Good that your doctor is suggesting it whilst your Mum is still relatively healthy, as less chance of complications if the patient is in relative good health. However does your mother want the operation? It's a difficult thing to talk about but you need to understand your Mum's thoughts on this and respect them. My Mum was clear she didn't want a PEG & though asked several times over a period of years she never changed her mind and for her it was very much the right deciscion. She was in her mid 80's, her quality of life was pretty poor, why would she artificially want to prolong it?I agree with Nanny857, talking to someone about how they want the end of their life managed is hugely difficult & upsetting. We were lucky in that our Community Matron guided us through it and made sure the appropriate paperwork was in place. But it was one of the best things we did. There was no question at the end about what should or shouldn't be done, I carried out Mum's wishes and she was able to pass away peacefully at home as she wished. And I got great comfort from knowing that was what she wanted. There was no questioning about whether I was doing the right thing or not, there was no guilt that perhaps I hadn't done the right thing.

My husband ( 78 ) has advanced PSP ( had it over 6 / 7 yrs ) and also Pulmonary Fibrosis which is progressing. His speech therapist is very keen for him to have a PEG but he is not. Together with our daughter ( who has looked up a lot of the pros and cons of PEG ) we are drawing up an Advanced Care Plan ( and also a DNACPR ) together with help from our specialist nurse. My husband is now under the care of the local hospice community care team who are brilliant and look totally at the patient as a whole, individual person with a family around him who needs support too. As a family we had a few days of pretty challenging discussions but it helped to make us far more honest and upfront with each other. My husband can change his mind on any of the directives but it’s been a relief to get done and now we can value and make the most of the time for us left together. Wishing you strength and Yes, this forum is so valuable. X

i also have psp over a year !!! reading this made me more understanding but I also get scared ...of having it !!!

My maternal grandmother and aunt had been kept alive for around 5 years each with tube feedings, bedbound, immobile and contracted, nonverbal, and minimally responsive, so it was with great relief to me that when I discussed it with my mother, she said she would not want a PEG. If someone is otherwise highly functional and has a lot of good days left, then a PEG could be very reasonable, and there are many on this site who have been grateful for the option; however, if your mother understands the possibility that she may die without it, and the possibility that she might not be able to change her mind later, it is her basic right to make the decision, and this right has been legally recognized in India.

Thank you all for sharing your experiences and views. I have since found other threads on the same topic too here - all very helpful. I should have added that my mother is in India, so not on the NHS, nor with access to such things as Anticipatory Care Plans, etc. However, she does have a very compassionate and pro-active doctor who tries to think ahead of the curve for her. We are most grateful to him for having kept her going for so long. Things are deteriorating though and mum is getting more and more fed up of the newest things not working for her - especially now that her speech is so garbled and her sight no longer allows her to read. The irony is she does want to continue living, her biggest driver being able to attend my sons thread ceremony (equivalent to a baptism) in spring next year! One of her biggest concerns about the tube is how awful it would look with a saree! :) I think she's also frightened of yet another surgery though. Anyway its a bit better since I wrote the other day. Her carer's have been able to make her walk a bit (she had stiffened up completely the other day when I wrote) and her doctor has patiently chivied her along to have the PEG fitted so that it would be out of the way, come next spring. She still does not want it, but feels less strongly than before, I sense - or maybe we are just bulldozing her into acceptance...that's the bit that worries me.

hero28 profile image
hero28 in reply to Tukan

Hello Tukan, My father in the same boat and is in India, His neurologists recently suggested PEG tube. did your mother go through the PEG procedure ?

The old bag has had a peg for years, one of the best things to happen, it has stopped dehydration and weight loss. Medication is easy and she has had more nagging time for me. The memories are still building.

Our Dad has decided against a Peg and this is on his file. He also has problems with swallowing and sometimes has coughing bouts. It’s a hard one but it was important to us as a family that Dad made his choice. He did and we abide by it.

My husband decided against a peg. He never had major choking issues until the general quality of life was so poor that it was not a good idea . Many on this site have said how the peg maintained a decent quality of life. Its important to clarify what the issues are for your mother. Its one of the few decisions they can make. All our family agreed with my husband's decision. I agreed but found allowing him to die so hard and it would have been intolerable if we hadn't talked it through.

My thoughts are with you all. Jean xx

My dad delayed having a Peg tube, he didn’t want it unless it was absolutely necessary however the dr recommended to him to have it done, just to keep it even if its not in use frequently for sometime. Dad had a mild aspirational pneumonia during covid, because he didn’t have a peg tube hospital kept feeding him through mouth which led him to icu.

After a month in icu he ended up with a peg. Then he started aspirating due to the formula. His stomach didn’t like the formula so he had reflux frequently. It took us about 6 months to switch to blenderized food through the peg, 4 long hospital stays one being another stay in icu in 6 months. Dad ended up with a tracheostomy.

If we started the peg journey earlier and started experimenting with it to get dad ready for later he wouldn’t have deteriorated so much, I believe.

Because he kept saying its not the time, we couldn’t push him too much as we thought he may never want it. It’s really difficult to discuss this topic so we avoided to push too much too.

I really hope you have a better journey than we have had. Speak to her, be brave and discuss the consequences or get the dr discuss those with her. I would Perceive peg as an insurance as it does extend our loved ones lives.

Praying for you and you mum x

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