Just been diagnosed

dad was diagnosed 2wks ago but we've been told he has had it for 2 years. We've been told he is advanced mid stage. His eyes only move side to side and he has gone from fork Mashable food with 2 scoops of thickener to purée with 4 scoops of thickener in a matter of 2 weeks. My dad was also diagnosed in July this year with throat cancer which is not treatable. Dad lost his wife and I've lost my mum in February this year after being diagnosed with lung cancer mum died two days later. It has been a hard time for us all and my dad just wants to be with mum which is hard. We have just been asked to think about dad being peg fed which after talking to dad he doesn't want. Can anyone tell me what will happen next as I feel I am struggling with all this news.

10 Replies

  • There are several carers whose loved one opted out of PEG tube. Usually the patient is in a hospice which will be very caring in his needs. If he is in pain, they will provide him medicine to relieve him of any discomfort. He will be given water intravenously If your dad and medical team agree that this will be beneficial..Sometimes just swabbing the mouth is best method for some hydration.....

    It will be important to talk to your dad and his doctor that his wishes be observed. There are some legal forms that you need to getr a hold of such as advanced directives that will tell medical staff what the patient wants if he can no longer speak.....and power of attorney that will help the caregiver direct medical staff to patients needs...I don't know half what everyone else seems to know ...but these are some thing s that might be considered as you and your dad get closer to these decisions. I pray that all goes well and that an air of calmness is about you as you and your dad meet the inevitable.


    And all thy children shall be taught of the Lord; and great shall be the peace of thy children. Isaiah 54:13

    The glory of young men is their strength and the beauty of old men is the grey head Proverbs 20:29

    For he has said, I will never leave thee nor forsake thee. Hebrews 13:5

  • Thank you so much for your reply. My dad is losing weight bless him but has again said he doesn't want to be PEG fed when the time comes which I understand completely and will support him in all his decisions. Reading some of the other comments it seems my dads condition is progressing differently to others. My dad has mobility but falls often but the change is his swallowing but this may also be due to the throat cancer. He has had a couple of down days and it's hard to understand what he is going through. He says he feels terrible and his head is all over the place and he wouldn't wish this on anyone. It has helped me so much just reading your comments as I find it hard to talk openly about my dads illness thank you x

  • Bless you , its a very emotional roller coaster my mum didnt want the peg fitted which I think was for the best. We kept mum at home and had all the help we could from carers, and with the help of my 3 brothers. When the end was in sight they attached a syringe drive and mum was made comfortable and I sat by her bed side day and night for 5 days till my beautiful mum passed away. Miss mum so very much but we had the time to tell her how much we all loved her to bits . Thinking of you try and be strong easier said than done I crumbled so manytimes. Takecare xx

  • It's so very hard seeing my dad so down. He says he's had enough but can still whisper to us (mainly due to thetroatcancer as this also affects dads voice) and can still eat as he loves his food. You're so right It really is a roller coaster of emotions as I feel I've not had time to think of mum because dad needs me. I am lucky to have such a lovely husband and children who are supporting me and dad and understand that I want to be with dad as much as I can. I think our parents know just how much they mean to us and I'm so pleased you had those precious moments with your mum x

  • Very precious times that will be locked in my heart forever, thinking of you sending hugs take care xx

  • So sorry to read your post. What a dreadful year you have had.

    I can't help you about the peg. My husband can still eat but has said he won't have a peg when the time comes.

    Some on this site have had positive experiences but it really depends on the wishes of the patient.

    I hope you find support at this difficult time.

    Love and a hug, from Jean x

  • It sounds like your husband and my dad may be at the same stage. i can't begin to understand how difficult it must be for you at the moment but I hope that you find the strength to get through the difficult times ahead. Sending love to you both x

  • My wife got a PEG and it definitely helped add 2 years to her life, but she was only 52 at the time and we had just tried Stem Cell Therapy, hoping it might cure her or help slow the progression. But eventually even your own saliva can make its way into your lungs and cause an infection. And you can also regurgitate the feed in your stomach back up into your lungs, which is what the doctors think happened to my wife. I think it was the saliva.

    It's a tough call to make. For myself, having just lost my wife and missing her like crazy, I would forgo it and allow nature to take its course more rapidly.

    God bless you and your family.


  • 52 is no age and I'm so very sorry for your loss. I am thankful for the fact that my dad is 81 and has lived a healthy life until these past two years. As a family we will support dad in whatever he decides but it's hard when he says his place is with my mum. They never spent a moment apart and he is lost without her. Thank you for your honesty regarding PEG as the leaflets they give you don't mention some of the points you have made. I feel the decision my dad has made regarding this is the right one. Thank you for taking the time to reply to me when this must surely be the most horrendous time for you. Your reply has truly helped me. Thinking of you and your family.

  • I think that even without PSP your dad would be feeling life has little meaning after the death of a much loved wife. I remember when my mother died finding I had no words of comfort for my father. [ we are not a religious family and he did not believe in an after life ]. The saviour for him was joy with a grandchild.

    I am nearly 80 and if , after losing my wife, I had throat cancer and PSP would be looking for a peaceful end after a fulfilling life. It is much more complicated for those who are younger.

    It is hard for you and I'm glad to hear you have a loving, supportive family there for you in these difficult days.

    much love, Jean x

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