Hello friends -- I am turning to you, because I have trusted you all for so many years. I am at a crossroads, and it isn't that I haven't prepared - I had conversation with Mom early on before she lost her voice -- So many of you suggested that I have "that conversation" regarding a feeding tube --- We did, and she basically said that if she had a need for a feeding tube early on (before disease advancement) that she would want one. I have family questioning me on why I haven't moved forward with this.
Hospice has declined the option, and suggested that I would have to go another route for the procedure to be done. Mom has lost SO MUCH WEIGHT. Her swallow diminished greatly ---
Any input would be appreciated. What did some of you do?
Hugs to all
Kim
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bazooka111
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We opted out of a feeding tube for our mom, which was a hard decision. But it was one that she made early on in her illness. She lost a lot of weight and it wasn’t long before she finally passed. It’s truly heartbreaking, but with this disease, it’s about the only way for them to “go”, naturally.
Oh Kim. It’s awful having to make these decisions isn’t it. As Colin had mental capacity & could indicate his needs by answering yes or know as thumbs up or down, even though movements were small, the doctor and I agreed with him and the PEG was fitted. Although we all knew this would not be for long, the 18 months he had left were a vast improvement on the months before when he had lost so much weight & feeding was a lengthy, heartbreaking experience ticking choking at every meal. Can your Mom communicate in any way? If so, ask her and do what she wants. If Colin hadn’t indicated yes to our question about the PEG I would probably have said no as I didn’t think he wanted to prolong his life but he wasn’t in pain, still wanted to go out, knew everything we said & could still do his funny humming laugh even though his facial expression never changed. If you’ve read my past posts you’ll know that he also made the most important decision of his life, when to stop feeding. Thinking of you all Kim.
Hi Kim, what can I say, PSP keeps throw curve balls, that even when you know they are coming, you can’t duck out the way. Steve didn’t want a PEG, until right up until the end, when we both panicked, but it was far too late by then. I never wanted him to have one, unless it improved his quality of life and not just delay his death.
This is so much a personal decision, talk to the doctor, or who ever you trust. They will be able to give you the pros and cons for your Mum, rather than just us telling you what suited our loved ones.
The only thing I do know Kim, is that you have done EVERYTHING possible and made the right decisions when needed, all through your Mum’s illness. You will with this one as well.
Hiya lovely one. We opted out of the feeding tube. Nigel's quality of life was not one that he wanted to extend so I followed his wishes.. It was very hard to do. I facilitate a carers group and one of our members husband died last week and she actually said that she really regretted his feeding tube because it was inserted too late on in the progression of this awful disease and as she said after his funeral she basically 'lost' him a year ago but didn't physically. In the meantime my prayers and big hugs are with you and your family. AliBee x
I’m so sorry that your mum is now very poorly. It might be of help to read my reply to Angel5805 yesterday under the heading “ Peg insertion.” Although today would have been my husband’s 80th birthday and I feel very sad and miss him terribly, the “ End of Life” stage with the right emotional support for myself and our daughter, was the right way to go for us and we feel relief that he is suffering no more. Love Susanne X
dear Kim my hubby never wanted one but in the end he didn’t get to that stage as the seizures took over were uncontrollably and we had to let him go .Good luck with what you and mum decide .Thinking of you Big hugs Maggie xxx
Oh Kim. It has been coming to this point for a while now. Be guided by the palliative and hospice people in your lives. They may have a better crystal ball than I have!
As I see it from here, your lovely mum is close to end stage. She is sleeping a lot, eating little and losing weight and losing her ability to swallow. Her system is slowing down and may not be strong enough to handle a PEG. It may give better nutrition, but what about a better quality and length of life?
I would guess she understands quite a lot. You have given her so much love and joy, and she to you as you have battled through this together.
Your answer may lie with Beckany's posts in the last 10 days. She had the same question about fitting a PEG. Her loved one sounded a lot like your mum, weight loss, swallow difficulties and sleeping, and she was also being urged to consider a PEG. Her most recent post indicated that the battle had been lost.
So don't be made to feel guilty by others requesting a PEG be fitted. You have always been beside your mum, taking care of her.
I don't believe there are miracles with this monster. I talked here about the downward trend with my love when he was sick. You have been battling a similar trend for a while now.
Maybe it is time to show your mum you are ready for her to decide whether she wants to stop eating and drinking, and that you will be OK with that. It may take a day or two because she will still not want to let you down when you have worked so hard to make her life a happy one despite this disease.
Gather the family around her and let them come to understand, and reminisce. You have so many happy photos. See if she can smile and be happy in her remaining days.
You will have a ring of thought and prayer all around you both, and your family from your friends here on this site!
You've done so well Kim in giving your mom as good a quality of life as possible. Chris was clear he didn't want to prolong life when he no longer had any quality. I agreed - but the definition of quality by the end was far lower than we had imagined !
He could communicate by squeezing my hand and was clear when he'd had enough. I understood and agreed with him but still found letting him go so difficult. Knowing our mum's wishes help you to cope afterwards . Your mom knows how loved she is and that helps. You are both so close and I know how painful this stage is. Big hug from Jean xxx
Prayers and hugs are all I can offer Kim. I think, however, family questions are based on underlying denial - anticipatory grief and fear of losing Momma.
Im reading your post with tears in my eyes, because of your pain and remembering that phase in my wife progression of the disease. I did my best to increase her calorie intake, but the weight loss continued. Especially when the apraxia caused her to be unable to feed herself. She declined so rapidly at that point that a feeding tube was never an option. So I cant weigh in on a feeding tube or not. I also realize the pain in the loss of communication so that it was often difficult to have her weigh in on her wishes.
From reading your posts over the last couple years, I know how much you love and care about the well being of your mom. Also that you walk with our creator God that blesses us with fruits of His Spirit, so Im praying for His wisdom, comfort, and confidence in your decisions on this matter.
Bobby tears flow as I read your words. This is a journey like no other, and few understand -- so, my heart thanks for reaching out to me -- its a lonely walk. I wish I could hug you right now! Thank you. xo
Dear Kim My heart really goes out to you and others have said it brings a lot flooding back to read your post. Steve did have a PEG tube fitted and it was only a couple of months before he passed. But I can honestly say for us it was the right decision as it meant any medication could be put through the tube and some special stuff to feed him. That meant that we had time just for us without having to constantly think through the nutrition which made the days a little easier and the feed went through over night. I don’t think it prolonged his life particularly but it did for us make things easier to manage. I too struggled with the decision as I didn’t want to prolong just for the sake of it and I think sometimes that is what people on the outside think, they think it’s a magic solution which it isn’t but it did make life easier to manage, it was one less thing to worry about. Even with the PEG Steve would drink coffee and milkshakes occasionally and he even ate a huge chocolate muffin one day much to the shock of one of the carers and the physio and nutritionist had a fit when they found out but as I said he is grown man and that is what he wanted to do and by that point he had little that he could do. Even had a small tipple of his favourite drink on Christmas Day and then died the following day but if you can’t do what you want as you near the end it’s not really fair so I let him have whatever he wanted. Sorry I am waffling as I am reliving memories. I wish you well and I know that you will make the decision that is right for you. Sending you lots of love and hugs love Sarahxxx
Kim there is no right choice.. John made the decision early on that he did not want a peg fitted and I did not want him to prolong what was an awful disease. He quickly lost a lot of weight as his swallowing deteriorated. I wanted him to go but didn’t want to lose him if you understand what I mean. You have given your mother the most amazing care and done so much for her and perhaps it is time to let her be at peace. Sending you a big hug. Pauline xx
• 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).”
On 2021-07, Dr. James Rowe points out: A PEG tube does not exclude eating for pleasure: favourite food and drink can be a continuing source of enjoyment and social engagement, while the PEG handles the bulk nutrition.
Ruth had a Peg fitted 2 weeks ago. She wanted it but she is not as advanced as your Mom. She can still communicate (albeit with difficulty) and enjoys sitting in with friends and family although she cannot really join in. We are just giving her water and laxative through it as she can still eat normal soft foods and drink.
The agreement is that when she has lost quality of life we are to stop feeding her through it (the hospice will still use it for liquid). If she is unable to communicate, I and the eldest child have power of attorney to make that decision.
It is quite a serious procedure - the piercing into her stomach is still painful and sore (but healing). There are risks it could get infected. I do not think she (or the family) would have wanted her to have it if she had reached the stage of your lovely mother.
Whatever you choose, know that you are the best daughter in the whole world! 😇
So sorry Kim to hear how things are progressing. Mum was quite clear that she never wanted a PEG and the doctors were also very clear that for a PEG insertion to be successful the patient should be in reasonable health. The poorer health of the patient the less likely they will be able to cope with the operation, which is perhaps where the hospice is coming from?
With the closeness of the bond between you and your Mum I am sure you know in your heart what she would want. Other family members have not walked the path with your Mum like you have and as someone else said are probably in denial. Have faith and courage, you will make the right decision for your Mum, as you have throughout.
I wish I could say something to ease the pain. Love to you all.
hello Kim I’m so sorry that you have to make this decision but I think deep down in your heart you will know what to do all these lovely people and carers on here feel your pain we feel guilty what ever we do but you have done an amazing job with your mum and whatever you decide is the right decision and I’m sure your mum will love you for it forever hugs To you ❣️
My husband, early on, said no PEG. Our family physician agreed with him, especially if he was in the late stages, as it would only prolong the inevitable. My husband chokes on his saliva and excess phlegm constantly now. He has lost over 100 lbs even though he was still eating quite a lot up to about three months ago. I made a log for two months of how much he ate, even with extra protein shakes, yet the weight kept dropping. So, for him, a PEG would not be of a benefit.
His speech therapist advised us he could still aspirate into the lungs even on a feeding tube. Once the digestive process slows, the feeding contents can back up or build up and some patients have to have the excess contents removed as this can cause pain.
Get as much input as you can, from her physician, perhaps a speech therapist and what are your Mom's wishes today if she can indicate.
It is very hard to stand by and not feel you have to so something. I could not accept it when my husband recently started skipping a meal and saying he wasn't hungry. I would try coaxing, pleading, anything to make him eat something as he is so thin. It was my daughter and hospice who finally convinced me that perhaps this is his body saying enough....just let him be if he doesn't want to eat. His dementia is worse in the last two weeks also. So while a feeding tube might provide nutrients, it will not stop the other conditions and demise but possibly prolong the suffering.
Whatever you decide, you are a remarkable daughter who provided excellent care, compassion, dedication and such love for her Mother.
Oh Kim, such difficult times. Reading what others have said, have you and your Mum been able to communicate whether she still wants one given the hospice's advice? I know we all hope to only have "that conversation" once but we also know the curve balls PSP\CBD throw us and this another. A bit like the labour plans we write for childbirth and some/all aspects get thrown out of the window as the labour progresses!
Any decision by you will be the correct one; made with love, thought, compassion and dignity. Be guided by the palliative team, they more experience of this. Ask them to talk to other family members too, you're struggling enough (understandably!) right now and do not need their pressure.
It is very easy for others to question your decisions yet they have not had the involvement that you have had. If the hospice has said no then they have done this for an extremely good reason and you and your mom had that conversation.
You're doing amazing, it's what you both discussed. Take care sending so much love ❤
Hi Kim, this is very personal, and every case is different. My wife Maria (52) in on her 7th year of PSP, she is fully paralyzed, but still hears and understands everything all though she can't communicate anything except for some smiles. The smiles tell us that despite being fully paralyzed, she enjoys her days, she enjoys the interaction of the children. We have got to the conclusion that life is not so much about what one can do, it's much more about being loved. I have a lot of respect for those people who don't want to be a burden for others at the same time that as a caregiver I'm thriving in helping my beloved wife. Yes its not always easy, but her smiles repay us totally, hence for us, in the case of Maria, we will try to prolong as much as we can for every day our Lord will give us. She wouldn't be smiling if she was not happy.
That said, it's now 2 years they had suggested us to insert peg, and we havn't yet done it as on one side Maria responds pretty well to amantadine (which in her case helped a bit on the swallowing), but also by finding that precise thickness which helps her swallow. Basically the thickness of applesauce or the thickness of yoghurt. 2 years later, and after a period of 2 to 3 months where she lost weight, she slowly regained it all... Breakfast might last an hour, lunch can be sometimes 2 hours... all is given through a syringe (she can't open her mouth) but the mix of applesauce, yoghurts, Clinutren HP/HC and soups), 4 meals a day, we syringe in the cheek (on the side of the mouth so that it goes on the side)... it won't work for all, Maria has "retrained" a little the swallowing thanks to this "consistency" of food.
Ultimately, the doctors know better and know if there is still enough strength to bare the operation. Hence my suggestion, is to discuss with the doctor and decide with them. Our experience is our experience, it says something about 1 case only
look after yourself kim, and don't look behind or at yesterdays decisions, its in the present that one must live.
Hi Kim, You have been in my thoughts and prayers each day. My husband has PSP , 8 years now, and early on he decided no feeding tube. I am in agreement with his decision since there is no cure or options for improved quality of life. We had a very informative discussion with his neurologist before signing DNR and other documents for state of NC where we live, as well as feeding tube discussion. Placement of the feeding tube is a procedure with some discomfort after placement and adjusting to the formula that is fed through tube can be a challenge for some until body adjusts-gas, diarrhea , nausea. It is certainly a very personal decision , but seeking medical advise may help you make an informed decision. Pallative care, hospice, personal physician, neurologist all good options to help walk you through this heavy decision. You have cared for your Mom with the utmost attention to every detail and love beyond measure. I hope you find the answers that will help you through this stage. BIG HUG!!! Pat
Dear Kim, it’s heartbreaking to read your post when you are faced with such a difficult decision. Ben stipulated from the beginning he didn’t want a PEG fitted, the speech therapist revisited the question as things developed but before his weight started to drop, she explained that it was the time to do it before it was too late, I’m guessing the hospice are taking this view too. It’s hard when your mom has indicated she was willing to have one fitted as it’s now up to you and the family to decide on her behalf, I’m glad I didn’t have to make that choice and think I would have chosen the PEG for selfish reasons of not wanting to lose him and not for him. It’s human nature to want them to hang on but I’m not totally convinced it’s always for the best when their quality of life is so compromised. It is such a personal decision that medical advancement has allowed for us and it’s down to you and the family. I wish you strength in having to make that difficult decision. Sending love K x
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PEG tube
Burning legs and feet; frustration with locum who suggested assisted suicide as a "Snap out of it" tactic :(
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Miss you mum xxxx
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