Tube feeding, choking or deep sedation/euthanasia? Your thoughts would help so much, we are quite lost about dad's late PSP stage.

Dear all, I have been following your posts which have helped me so much communicate invaluable information to my mum who is supporting my sick father, most of all the knowledge that she is not alone dealing with this awful disease. I translate your posts since she speaks French and lives in France and feels isolated, there is only a very small PSP victims and carers network there.. Today for the first time I would like to directly call for help, and hear your thoughts on a very difficult subject: euthanasia or what they call 'deep sedation' in France. My dad has been diagnosed with PSP 4 years ago which just followed a prostate cancer for another 3 (this hid some of the early PSP symptoms), so it has been 7 intense years for us, mostly my mother who has cared for him 24/7, she put up with so much it would take a book to write about it. She has finally accepted daily help from nurses at home in the past 3 months but cannot bring herself to put him in a home. My dad has not been able to say more than a couple of words a day since a year (although his mind seems relatively 'aware' since he reacts to memories etc the right way most of the time when we speak, some other time he is just completely apathic and often says words that are unrelated to the situation), he is almost chairbound his legs no longer carry him but he has this terribly strong grip... each day each night he used to try to get up, falled over and injure himself badly regularly. Less now as he cannot lift himself as much, we were advised to put barriers on his bed so we did, he still 'creeps' over them sometimes. He has also been incontinent for a year and cannot wash himself any more, he was a very private man, this has destroyed his pride. You all now these symptoms of PSP, which have been amplified in my dad's case due to his predisposition for severe depression, feeling of unfairness and anger. We are now facing another stage in this illness: he has been choking on his food and drinks for a while but despite the use of straws and softer foods, this is now getting out of hand, it happens almost at every meal. He is also so paralysed that my mum feels she may have no other choice than to think about putting him in a medicalised home, her own body is almost failing from carrying him from chair to toilet etc. But our fear is that they will 1) bind him most of the day and night since he tries to get up and falls so often (sometimes every 15mn) and 2) switch to tube feeding him since he chokes so much. This is just about the limit of what we can let my dad suffer, it would amount to torture especially with his zero acceptance of the disease. He has asked us to help him die about 5 times a day since diagnosed years ago... In France, euthanasia is illegal so we could not respect his wish (and could not bring ourself to go abroad and actually let him) but recently we have been told about something called 'deep sedation'. Which amounts to a soft 'euthanasia'. They essentially put the patient to sleep him and let him die naturally, they do not inject to euthanise. It seems a bit of a word technicality that amounts to the same action. We are torn between the idea of therapeutic relentlessness and the knowledge this will be hell and amounting to torture to my dad versus helping him to die. Have any of you been faced with these thoughts and options between worst and worst? We don't even know if we would be able to trigger doctors to let him be sedated since he might not be considered sound of mind enough to voice his wish. We are sure he wants to die and does not want to be tube fed, but sometimes we think if he really wanted to die he could have taken his life by taking all his pills at ones or other when he still had enough strength and awareness to do it. So we just don't know what to do any more. Your thoughts would really help us, not to make a decision but to know if you have faced something similar, and if we can refuse for him to be tube fed if he is in a medicalised home, but then what, wait until he chokes? ha this is just awful. Thank you so much for sharing any of your own experience or ideas with this..

[Julieandrog]

Hi

Not sure if much help as you are in France but do you have the hospice organisation within your reach? As dad has no capacity I am sure they will be discussing aspects of care with the family.

He sounds like he needs good palliative care, luckily Rog made his decisions re tube feeding before he lost capacity , in our opinion peg feeding will just prolong the agony.

Be brave, thank goodness we live in the uk, more support here.

Julie x

[Hidden in reply to Julieandrog]

Thanks a lot for your words, France is pretty good in terms of healthcare and my dad has access to a neurologist specialised in PSP. But sometimes they are too medically focussed so have a tendency to be heavy handed with medication and operations when perhaps it should be time to let go, they 'prolongued' by grandmother with tubes for over a decade which was also nightmarish for us all. What's also missing is networks for people who care for PSP relatives, I just think people don't use the internet as much in France especially over 30s... so it's good to find this forum. Despite being very hard, it is good that your partner shared his thoughts while he could on this difficult topic it does ease pressure on the family.

[easterncedar]

I have no advice, just deep sympathy. You are in almost the most difficult situation imaginable as far as this disease goes. I dread coming to the same place, although in general my guy has been temperamentally very easy. The choking is torture. Wishing some better days for you all, ec

[Hidden in reply to easterncedar]

Thank you! I do hope you will not have to get to this stage since it seems this illness affects people differently, I also believe that when people are eaten by hate and anger it can worsen some aspects of the disease, it's good to hear that some people like your partner keep an easy temperament despite the illness. I sometimes wish as a family we had given a bit more thoughts about all this when on a few occasions before my dad got really bad, we called emergencies and they saved his life. Perhaps this would have been the time to let him go..

[notentitled]

Dear ValKrash, my heart goes out to you and your family. My husband's wishes are the complete opposite of your fathers, he wants all measures to keep him alive. I had placed him in a nursing home for respite for me until I was able to find 24/7 care. One week later while in the home we both came down with the flu and then he was transferred to the hospital when they felt he had pneumonia. He apparently had aspirated and it wasn't secondary to the flu. He had been on thickened fluids and I was careful on what he ate since he would cough throughout the meal. His options were for them to keep him comfortable or place a G-tube for nutrition, he chose the G-tube. He spent 3 weeks in the hospital, one in intensive care since they couldn't control his blood pressure with the medications available to go in his IV. After 4 days without any nourishment, since he was too unstable for them to do the procedure, they placed a tube down his nose, which he pulled out during the night and had to have restraints placed. Prior to being discharged back to the nursing home he was unable to urinate and now has a Foley catheter also. It was gut wrenching to sit there and hear him gag and choke on his own saliva continually after the procedure until days later they gave him a patch to dry up the secretions in his mouth which has helped . He has attempted to pull out his feeding tube, has pulled at the catheter injuring himself, while in the bathroom will attempt to drink water, begs to eat and drink again even though I have told him that may never happen. When he was being discharged the social worker for palliative care said it wasn't a matter of if he'll be back but when. They explained to him how if his heart stopped they probably would break some ribs while resuscitating and he would need to be place on a respirator since it would be difficult for him to breathe on his own. I am following his wishes even though for me I feel the complete opposite. He has felt this way years prior to being diagnosed with PSP. You feel since your father hasn't taken his own life by overdosing on his medications that this may not be what he really wants and the burden of making a decision for 'deep sedation' is then placed on your shoulders. I will keep you and family in my prayers for guidance that you are able to do what is best. There are no easy answers. God bless.

[Hidden in reply to notentitled]

Oh my god that sounds terrible this is just about the worst case scenario when you have a clear will expressed and have to watch your husband suffer through all of this at least we only have a small doubt that he might want to be kept alive regardless of how. Once after a choking episode my dad was taken to emergencies and despited being tied he wriggled out of it, tore out all the tubes and catheters that they fit they found him wandering in the hospital, and on top of this the one sentence he managed to say to my mum was 'if you let me here I will never forgive you'. He tends to say horrible things to her, but thankfully there are also some good days. I heard that music triggered great response for Alzheimer so I thought I would try it. My dad loved the singer Jacques Brel and playing his CD triggered the most reactions I'd ever seen, on a particularly strong love song he grabbed my mum's arm who was sitting next to him, he refused to let go and looked straight in her eyes for the whole song, it is clear he wanted her to know the lyrics were for her, at the end he released the grip and his look was dim and remote again. That made me cry as I never heard him even say I love you to her while he was healthy... I hope you find these islands of peace in the middle of all the rest and that they can soothe the medical nightmares.

[pzagy]

I know only to well the pain in seeing your dad suffer the way he is now. I am not sure about the laws in France, but in Canada if a family member has been given authority through a living will or POA then they can make that decission.

When my mother in law was dying, the doctor asked my husband and his brother if they wanted to continue recuscitation, since they were granted POA they declined and she was able to die peacefully.

I hope you can find the answers you need

Hugs

Paola

[Kevin_1]

Dear ValKrash

You write with such understanding and compassion.

Your mother sounds an extraordinary woman to do all of that care on her own. When we lost our carers for just three months I was on my knees.

Is it legal, in France, to tie patients to chairs? I know the EU was addressing these issues some three or four years ago. It might be worth checking.

The only place in Europe, that I know of, which permits euthanasia is Switzerland. They are geared up for visiting foreigners to make use of that resource too.

In the UK the medics would use a PEG (like a tube into the stomach) for feeding. I know many here are doing that. Liz, my wife, has explicitly drawn up legal papers refusing that treatment when her time comes. She wants to go onto a drip for fluids and pass away peacefully. I know little about them, but I am sure others here know a lot and will come back to you.

I really can understand him becoming depressed about the illness. Quite often that is softened by the slowly diminishing awareness this illness brings.

Is there some sort of Hospice Service your Mum can contact? Here they will come to the home and advise. We are getting a visit from one tomorrow. They are very good at these sorts of issues.

I'm sorry I couldn't be more helpful.

With best wishes to you all

Kevin

[Duffers]

Hello there. This all sounds so familiar. My husband is in hospital at the moment. He has just had a feeding peg fitted and I am being trained in how to put the feed in at night. He is at home with me all the time. He cannot walk. Aided or unaided, he cannot wash or dress himself. He is incontinent and wears a convene and pads as sometimes hes doubly incontinent. He can hardly speak at all. He chokes a lot of the time and his mouth is actually closing so putting a spoon in for pureed food is becoming harder. He has no peripheral vision at all and different focus in each eye. The hospital asked for DNR decision and he said he would like to be.

Our local hospice see him every two weeks and they were instrumental in getting the peg done so quickly. But they must have one nearby in France to give some help and advice. Do tell your dear mother to go in there herself and speak to them, which is what I did initially. Good luck and god bless. Marie

[roxiemcgregor]

Hi, that is a hard call to do what is right or ethical. I don't believe in allowing people to suffer if there is no hope of recovery. For myself I would want out of my suffering. He is suffering so much and I think we have an obligation to help if we can. My gramma choked to death and it was horrible. I would go with what the hospital recommends.

[abirke]

You might ask what sort of hospice to help with the process of dying they have in France. In the US they do everything to help them be comfortable and safe. They do not however practice euthanasia. But if someone is taking care of your dad, then perhaps this method would not be considered. There are meds to reduce the anxiety and of course meds to reduce pain....My husband was just admitted to a hospice. Though he lives at home, they provide him with Morphine and Lorazapine to relax muscles open up breathing. My husband does have a feeding tube, but if that is not going to be used, then once that's been established and food and water is kept to a minimum or none at all, the body will not last more than a month or two....If he's in the hospice, his wife won't have to worry about it and the anti anxiety will probably reduce his need to jump ship if you will....

Good luck

AVB

[1RobK]

Personally it's up to your mum. I would suggest not going with the PEG, if it were myself.

My mom has the tube, my sister and I pushed. More I see the disease progress I have second thoughts.

Wasn't until the last couple of days my mom is falling out of bed. Wasn't up to this point we had any trouble. We have a thumbs up and down communication, with that she was indecisive weather she knew why she was trying to get out of bed.

Best to support mum in her wishes, listen and support. Let her know either way she choices she is loved.

Rob