Risk feeding

With a broken heart I write this about my wonderful dad who has had parkinsons and lewys body for just under 4 years I can’t even begin to tell you how it’s affect his body… On Friday 5th Oct my dad got admitted to hospital with difficulty breathing he has had pheumonia in March since than had a cough so he got took in on that Friday after making a gurgling noise… Once admitted they thought it was a water infection but I kept saying I think it’s his throat anyway we are now on week 4 still in but he is sleepy they had a feeding tube in but wasn’t working they decided last Thurs to start risk feeding but he can no longer swallow… I went with my mum today after been there all last week Saturday my dad was more alert babbling away which compared with last week this was great felt like Christmas had come early… But when I went with my mum today we got there his mouth was covered in mucas so my mum and me said there was no way they had cleaned my dads mouth they can’t get him to have his tablets I don’t no what to do please can anyone tell me what they think or can help me

Hi Carebear3,

I’m so sorry to hear about your dad, it must be a very difficult time for you. Please reach out to our free Helpline team on 0808 800 0303, as they will be able to offer plenty of advice and support that you may find helpful. They’re available on Monday-Friday between 9am-7pm, and on Saturday from 10am-2pm.

I hope this helps.

Best wishes,

Moderation Team

Hi carebear
Can I direct you to a post by Pisuke called post acute treatment .
If you cannot find it let me know and I’ll share the PM’s
This case sounds the same as your dad’s where the staff continued to medicate orally only later to find complete tablets in the patients lungs
There must be another way of delivering his medication and this could explain your dad’s lung condition.
Hope this helps but please contact me if you don’t find the post
Take care of yourself as well
Tommy x

Hi carebear3 so sorry to hear about your dad I hope this maybe of some help my father went through exactly the same thing almost a year ago after a couple of stays in hospital the last time he was taken in everything he was swallowing was going to lungs due to his age and condition there was nothing they could do so with heavy heart myself and my mother decided that as he had no quality of life to ask that treatment be withdrawn and he be kept pain-free I realise this is not what you want to here but as Tommy said try to read posts by pisuke you need to as a family talk with doctor if you want to ask me anything please don’t hesitate to contact me I will be honest and try to help as best I can

Hello Tommy I feel as if my heart has broken into he is so strong in other ways it’s this one thing the swallowing that’s taking him away from me you can hear the mucas in his chest… I no what’s going to happen but if I can just make life easier for him I love him so much I never thought at 38 I would be losing my dad thank you so much for messaging me

Hello Pete thank you so much for your kind words i feels empty heart broken inside 4 weeks not been washed when we go his mouth is full of green rock hard stuff he keeps chatting but yesterday his breathing was so strange I broke down in front of the doctor they keep saying you no how poorly he is I’m not silly of course I do… He is 70 seems no age to be fighting this battle but I have to be my dads voice now I’ve just read your message to my mum she seemed a little happier thank you so much

Hi Tommy I’ve just tried to find it but can’t please could you help me thank you

Hi glad it was some help I hope it wasn’t too blunt but could not find any other way to say it having seen dad, his brother and sister go through it all and knowing it is coming my way I may have a different opinion but I have made it clear to my 2 mates who have stuck with me and my cousin when my quality of life goes iam not going to suffer as a family you know what is best course of action all I can say is remember the good memories and discard the rest I, m here if you need me anytime most importantly look after each other and stay strong

Hi carebear 3
I’m so sorry for you and your family and I hope you find the courage to get through no in fact I’m positive you and your family will find the strength.
If you search for a post called acute care you should find Pisuke there Francesco’s dad was in Italy at the time and your circumstances are very similar
Stay strong for your parents my friend.
Me and Peter will be here for you to talk to by pm if you prefer
Love Tommy

Hi carebear 3
Are you in an English hospital?
What you said to Peter about being your dad’s voice is absolutely true please don’t just nod the head in the appropriate places .
Say what you want to be done and don’t worry about upsetting anyone you’re only asking to have your dad treated in the same way they would like their parents to be treated with respect I promise from the bottom ,top and middle of my heart that you won’t regret that no matter what other members of the family may think but you may if you don’t .
Stay calm and assertive and you will get there with a clear conscience.
Love to all of you I’ll be thinking of you all as will Peter .
Tommy xx

Awww Tommy and Peter your kind words stayed with me all day been at hospital since one saw the doctors at half two we asked what the next plan of action is and they said the parkinsons consultant had been to look at my dad they want to put a mg in which I believe is the feeding tube to see if he can get stronger there going to try for three weeks if after 3 weeks they don’t see any difference they said they will stop the tube… I just wish I could get his throat stronger the muscles are to weak that’s why his tongue has started to stick out…when we came out the meeting my dad had his mask on but when me and my sister spoke he started crying :cry: we kept saying dad what’s wrong stroked his head I wiped his eyes just made him comfortable I hate seeing him sad I will keep you both updated and thank you so very very much

Hi carebear 3
Thanks for your update.
Did you see Francesco’s post?
And is your dad in an English hospital?
We are always here for you to give support so you are very welcome.
Tommy x

Hi Tommy yes my dad is in a English hospital… Hopefully fingers crossed he may get stronger I’ve read francesco it does sound like my dad but they won’t put the peg in my dad and he hasn’t been offered a blood transfusion… His mouth was covered in mucas today after the meeting nurses told to clean dad’s mouth every hr so fingers crossed but I did notice his tongue is sticking out more maybe because he isn’t swallowing… Would you believe the Thursday before he was admitted he was sat up shouting for my mum lol now he can’t talk but he did pout his lips today to kiss my mum she was made up hope your okay Tommy and once again thank you do glad I found this website

Hi carebear 3
Sounds like you and your family are beginning to take control of your dad’s care and that’s where we wanted you to be .
Also today you remember the pout as your dad kissed your mum and the story of him sitting up in bed on Thursday shouting made you smile
Thank you for sharing these beautiful moments.
The images even make me smile.
That’s exactly where Peter wants you to be.
Cherish these moments because they’ll always make you smile.

Hi carebear3 thanks for the update you already seem to be in a better place mentally just remember your dad is your no. 1 priority now and I do know how hard it is and what you are going through as a family it, s a year Nov 13th since my father died it is tough but stay focused on all good times please keep us posted and we are here 24/7 if you need any support

I think your Dad needs some good basic nursing ie getting his mouth cleaned and moistened. Is he sitting up, which is better for his chest. Has he been diagnosed, from blood tests, as to being dehydrated? If he is he should have a drip up. His situation is heart wrenching.@


My mum is sobbing as they weighed my dad today 9 stone 5 he was always a good sized man but my mum said he didn’t wake up once even when they carried him to the weighing chair I’m really scared today I have felt so low… Have you ever known anyone not to wake with this illness he keeps trying to open his eyes but can’t x

Hiya carnation I’ve taken a pic of his mouth as we turned up it’s all on his teeth the back of his throat but he isn’t waking up even when they moved him to weigh him nothing just stayed asleep… I just don’t understand why he is so sleepy even when he got admitted 4 weeks ago he was awake trying yo get out the bed… I’m so very sad :pensive: my heart is :broken_heart:

Carnation is 100 percent correct .
Your father is lethargic because there is no hydration no saline drip .
It’s wrong not to tell your family about this action but entirely common .
There should be no secret talks in staff rooms.
You and your family can and should be well informed of the prognosis for your father and allowed your input in this process
A very sad Tommy X

Hi carnation
My mum said he did have a drip up but there now saying his veins are to thin to get canule in and blood out… No fluid since Tuesday night but did have the feeding tube put back in… All your advice from yourself Tommy and Peter is so very appreciated