Experience of PEG feeding.: Hi Everyone My... - PSP Association

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Experience of PEG feeding.

Peter3 profile image
31 Replies

Hi Everyone

My husband has been attending our local day hospice for 4 weeks and today they talked to him about advanced planning. For sometime he has maintained he would never have a Feeding tube as it would just prolong his life. He has starting choking quite frequently now with both food and fluids, so we may not be that far off when the decision maybe more pertinent.

What experiences do people have with feeding tubes either from a sufferers or a carers point of view?

Peter3.

31 Replies
jillannf6 profile image
jillannf6

hi pet er2

i ha ve drawn up LPA AND AN A4 SHEET RE MH WISHES WHEN I CAN NO LONG ERDO ANYTHIGN FOR MYSELF

OT INCLUDES NO PEG FEEDING

AS A PSP PERSON I CAN ONLYH REITERATE WHATI WANT OT HAPPEN ROR ME

WHATMDOE YOUR HUSABNS WANT?

C AN HE GO ALONG WITHE THE HOSPICE ADN THEIR FWD PLANNNIGN>??

I REALLY DO NOT WANT A FEEDING TUBE WHEN I CAN NO LOGN ER ENJOY MEY FOOD

LOL jiLL

:-)

Peter3 profile image
Peter3 in reply to jillannf6

Hi Jill,

Thank you for your reply. I particularly appreciate it from you as a psp sufferer. My husband is not able to express his thoughts and feelings anymore and frequently the comments you blog along with Peter Jones from Queensland have helped me to have more understanding about what my husband is experiencing.

My husband seems to like going to the hospice and is benefitting from what they are doing for him, this includes sorting out his pain relief. He has a lot of pain in his arm and all the investigations cannot find a cause for the pain, I think it is most likely psp related.

Keep strong,

Best wishes

Peter2or3

Jane2212 profile image
Jane2212

My mom was scared of having a PEG tube and we cancelled the op at one stage. However, an MND consultant told us it would improve her quality of life and that starving to death was a long and unpleasant process. The op was quick, went well. She put on 3 stone in weight in 12 months, looked good, felt better and lived another 3 years. The PEG was no hassle to set up. Mom still had nice soft bits to eat on days she could manage it but the worry of getting food down her was taken away. We did have occasional infections in the PEG area but that was all. I asked her lots of times if she was happy the PEG was done and she replied 'yes'.

Jane

Peter3 profile image
Peter3 in reply to Jane2212

Thank you Jane2212. I am trying to get as much information as possible and your comment is helpful in that your Mom obviously benefitted from the PEG without too much discomfort. I feel my husband has made the decision without knowing the benefits.

Best wishes

Peter3.

xtasea8680 profile image
xtasea8680 in reply to Peter3

Peter3 Any new ideas on PEG feeding? I'm trying to decide.

Nanc

cabbagecottage profile image
cabbagecottage in reply to Jane2212

It sounds similar the the position my mother was in , she also put her weight back on was able to eventually swallow some .

xtasea8680 profile image
xtasea8680 in reply to cabbagecottage

cabbagecottage I need to keep or put on weight ..... and to be healthier and have more energy ..... considering PEG feeding very soon. Any help will be great for me. Nanc

Gayly profile image
Gayly

My mum and dad both decided against the feeding tube rather than prolong dreadful suffering. For quite a long time they managed with thickened liquids (using a special powder) and purified food.It is a hard decision to make and although I wanted them both to be here for longer it was awful to see my dad unable to breathe and using a nippy breathing aid and to see my mum unable to move or speak. Neither of them wanted to live this way. My thoughts are with you.

Peter3 profile image
Peter3 in reply to Gayly

Hi Gayly,

Thank you for your comment about the experiences of your parents. It is hard knowing that not being able to eat leads to starvation, but being fed via a PEG only prolongs the dreadful suffering. Obviously I will respect my husbands wishes, but he needs also to know the options.

Best wishes

Peter3.

jimandsharynp profile image
jimandsharynp

There seem to be two camps when it comes to PEG feeding tubes. One is that it works and stops the patient from suffering hunger. The second, and I've see several post, is that the tube only prolongs their life with no treatment for PSP or much relief for symptoms ahead. They indicate they wish they hadn't done it. The patient in some instances becomes a captive in their own body, not being able to speak, see, etc. Another thing is be careful because in some countries/states once the tube is in it stays in with NO option to remove it later EVEN IF YOU AND THE PATIENT WISH TO REMOVE IT. Make sure of your standing on removal before you go ahead. My wife doesn't want a feeding tube because she doesn't want to be kept alive in an extremely disabled state possibly captive in her own body. One question to ask is "Am I doing this for the benefit of the patient or for myself and family?" Good luck with this tough decision.

Jimbo

Peter3 profile image
Peter3 in reply to jimandsharynp

Dear Jimbo,

Thank you for your reply. Your response is succinct and so pertinent when it comes to who is benefitting from the decision. I am quite clear in my mind, but I'm not so sure about my husband who has a great deal of difficulty expressing his thoughts and feeling.

Best wishes

Peter3.

jimandsharynp profile image
jimandsharynp in reply to Peter3

Peter, Thanks I try to "tell it as I see it" and not "soft petal" anything. It's enough of a struggle with PSP without facing the truth (what I see as the truth):)

By the way, I always enjoy reading your posts and perspective on things.

Jimbo

xtasea8680 profile image
xtasea8680 in reply to jimandsharynp

jmandsharynp I'm 86 and I'd like to say fairly healthy. I care for my hubby who is 80 and has (somewhat mild Alz). I have Achalesea - throat muscles barely work .... lots of trouble trying to eat and drink. I can only sip. PEG Tube sounds good to me so far. But needless to say ... kinda scary. I'm a good cook but know I won't want to cook if I can't eat it. Any comments for me? I've lost about 40# and can't afford to lost much more and have any strength.

Nanc

cabbagecottage profile image
cabbagecottage

I know it's not the same think but ... My mum had a very bad stroke and while still on hospital was offered a FEED PEG .. In the first place they had asked if I would agree to sign for her but while doing so she answered for herself and also agreed . Although she had to gon into a nursing home , she improved just a little and lived for a further 3 years , I was very apprehensive at the time but we did enjoy some happy times with here during this time .

I don't know how either my husband.or I will feel if/when he is faced with this decision , I have asked him but at the moment says he wants to make up his mind if ever it became neccesary.

Peter3 profile image
Peter3 in reply to cabbagecottage

My husband has made the decision but I'm concerned he has done it with limited information. He has stated he doesn't want to prolong his life and whilst I find that hard I do respect his decision.

Best wishes.

Peter3.

goldcap profile image
goldcap in reply to cabbagecottage

cabbagecottage, it IS the same thing! Anytime one is faced with the decision to intervene or not for someone they love is relevant (regardless of the disease). My mom also had a stroke, and did not have it in her to go through grueling rehab. We brought her home with a caregiver. I showed up for her 80th birthday from across the country, and when she took a turn for the worse I stayed to be with her. It was the best decision I ever made in my life! I am very glad you were given 3 more years with your mom, every day is a blessing. But I watched all my siblings trying to make my mom hold on when she was just tired of how exhausting her day to day existence was. She just stopped eating. There was not a horrific, "starving to death". No pain. She had small dosages of morphine. Her breathing became less labored, and she took her last breath in my arms-I was right there curled up in the hospital bed with her, ( like a cat my brother's wife said:). It was the most incredible experience of my life. For fear of sounding like a LA spiritual nutcase I will not go into further details. Let's just say I will never fear death-maybe sadness for accomplishments laid by the wayside, or unfulfilled bucket lists, but never passing. It was that beautiful and peaceful. When I called my partner and said,"mom passed in my arms", and he said,"good, now you will come home", I knew it was PSP talking. But I also decided I would honor his decision NOT to have a PEG when the time arrived. And I will do everything in my power so his last moments would be as my mom's were. Yes I miss her with a ferocious intensity there are no words for, but I would never want to keep her around when she did not have any fight left in her. There are no right or wrongs here only individual choices. Trust your gut instincts, listen to your loved one ( even if it means doing something you are not comfortable with ). Take care, and best to your husband.

cabbagecottage profile image
cabbagecottage in reply to goldcap

that sounded very peaceful . My mum was ninety when she had her stroke and spent five months in hospital where she MRSA . We spent every day in quarantine . From there she went into a nursing home . Her stroke was far too severe for me to bring her home . on top of that my husband was struggling , we were unaware that he had Parkinson's at that time . I though he was having small strokes or even had a tumour . In spite of this we visited her daily for three years . It was in her last week that my husband was officially diagnosed Parkinson's so we had started juggling with his medication . A

though we had spent so many hours with her unfortunately we were both so tired that day we had to leave her and she died before we could return .

goldcap profile image
goldcap in reply to cabbagecottage

CC, all of my siblings and their families were gathered the night she passed. It was not until they all went home that she did. We knew it was close but she hung on. I have heard that sometimes they hang on for us and that in order to go they wait until we are not present. Sounds like that was what she was doing. Daily visits. Wow. You are a good daughter. Good luck with your husband! Take care, Jayne G.

cabbagecottage profile image
cabbagecottage

My mother was fortunate in as much as she didn't have any problems with the feed peg , I don't know if that is always so .

Jane2212 profile image
Jane2212

Hello again, I should explain that in my Mom's case - and I know they are all different - her quality of life improved as she gained weight, possibly because of the nutrients and also because the stress of mealtimes was over. It wasn't a case of prolonging a poor life, but extending and improving her life by 2.5 years or more. But I know this isn't the same for everyone. My Mom was initially apprehensive of the PEG though and had asked for one planned op to be cancelled, much to the disgust of the dietician.

Jane

X

Hi Peter 3, I feel for you in all this. I wondered what my hubby would decide but never brought it up until we saw a documentary on tv. He was horrified at the thought and decided then and there he wouldn't have one. I later read several articles that said it was not a good idea for diabetics and that it would not prevent aspiration pneumonia from secretions, so I felt better about his decision. There are pictures and articles that present both sides if you think he is receptive to exploring the information. In the end, all we can do is hope they have made the right decision for them. Not easy, though...I know.

Take care,

Rosemarie

Kathy profile image
Kathy

Hi Peter3,

I just want to say ignore all the emotive comments about "starving to death".

Just because you decide not to have a PEG doesn't mean you stop feeding someone! Instead they do what they call "at risk feeding". It means you do whatever you can to minimise the risk of aspiration e.g puree, fluid thickeners, little and often etc, but you accept the fact that they will be at risk of aspiration and developing a pneumonia.

It's a tough decision but I'm sure you know your husband better than anyone. My own personal opinion is of the "why prolong the agony" camp. Does your husband have any quality of life? Is he able to get around, does he recognise friends and family or is he merely "existing" ?

Whatever you decide when the time comes I'm sure there will be times when you'll wonder whether you made the right decision!

Sending lots of love to you and your husband and keeping you in my thoughts

Kathy xox

shasha profile image
shasha

HAVING READ AL THE COMMENTS I HAVE DECIDED NOT TO HAVE A PEG FITTED - I DID SEE A LADY IN HOSPITAL WHEN I WAS IN HAVING A DRUGS HOLDAY , PRIOR TO BEING DXD WITH PSP IN NOVEMBER , WHO HAD A PEG FITTED AND SHE WAS JUST LIKE A BABY - HAVING TI BE CHANGED AND WASHED LIKE A BABY - I COULD NOT THINK OF ANYTHING WORSE FOR THE NURSES OR FOR ME - SO MY FAMILY KNOW MY WISHES AND AS LONG AS I AM PAIN FREE I WILL JUST SLIP AWAY HOPEFULLY

MY LOVE TO YOU AND YOUR HUSBAND

SHA SHA

Peter3 profile image
Peter3 in reply to shasha

Hi Shasha,

Thank you for your comment. Your decision is like my husband, he does not want to prolong his life by artificial means however, neither does he want to suffer unnecessarily.

Love to you.

Peter3.

Peter3 profile image
Peter3

Thanks Jimbo for your comments. I agree with you that it is important to be straight with all the issues that arise with psp. Better to know as much about the facts possible and then at least decisions are informed ones.

Next week at the hospice we are talking with the doctor about advanced directives for my husband. He has decided PEG feeding is not for him neither does he want antibiotics later in the condition.

Peter3.

Jay29 profile image
Jay29 in reply to Peter3

Peter3, Having recently had to make very similar decisions about my partner, our local hospice was a great help in providing palliative care for him and your hospice will do the same for your husband if he sticks with his no PEG decision. It's a really hard decision and even though my partner had no quality of life, like Kathy says, I wonder if I did the right thing. If you don't want to raise the subject of end of life care in front of your husband, try to speak to them separately and discuss how they will help.

Thinking of you.

Jan

Peter3 profile image
Peter3

Thanks Jane. I have spoken to my husband about the possibility of his life being improved and showed him your reply. Like all of the decisions about treatments that help to support and prolong life it is so hard to know what is right for the individual and hence why I will stand by his current decision not to be PEG fed. There isn't much now that he has control over but at least he can still make this type of choice.

Peter3

Peter3 profile image
Peter3

Hi Kathy,

Thank you for your comment. I agree with what you are saying about prolonging life for people with psp. My husband does still have some quality of life in that he is able to move around a little, he knows who we are and he does have some speech albeit very quiet and at times very difficult to understand. He is dependent on myself and our daughter to help him with everything he does, so not a brilliant quality of life.

Best wishes

Peter3.

Peter3 profile image
Peter3

Hi Everyone,

Just to say thank you for all your comments about PEG feeding. My husband and I had a very useful discussion about what he wants in the future.

At the hospice this last week, my husband talked to the doctor about Advance decisions and the forms were duly signed. Knowing what his wishes are has helped us as a family and now we are going to live each day to its fullest.

Peter3.

pollyannajo profile image
pollyannajo

Hello everyone ,

I have today just had the same conversation with my relatives nursing home re the PEG feed or not . Some months ago when he could make this decision he elected not to have it fitted. Today the doctor has spoken to him to confirm his wishes and they remain the same-am not sure he completely understands now tho. Group hug please.

We all worry we are supporting our relatives enough , with this dilemma there is no right or wrong route is there?

All we can do is endeavour to be with our loved ones to the end and stay strong for them

Love pollyannajo

goldcap profile image
goldcap in reply to pollyannajo

pollya, sounds to me like you have a very good head on your shoulders and a big heart. Major big hug to you and your family.

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