My husband was diagnosed with likely CBD nearly 2 years ago and has been incontinent, immobile and unable to speak for over a year. He has been eating food with thickened drinks but in the last week he has been very sleepy and I’ve found it difficult to feed him as he either nods off or doesn’t open his mouth.
We had been referred to have a PEG inserted before this happened and by chance he is spending a few days in a respite hospice at the moment
The doctors there have questioned whether the PEG is appropriate and kind at this stage in his disease and I am conflicted now. I have read about this procedure and appreciate that there are risks but I am wondering if anyone in the community has experience of this?
My husband has been losing weight and he has a DNR in place but he is not at end of life just yet. The worst part of this illness is his inability to communicate in any way and we do not know how cognisant he is. He is undoubtedly depressed. So I am not aware of his wishes.
If anyone has any comments or thoughts it would be appreciated
Thank you
Written by
Angel5805
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Hi Angel, I’ve posted at length in the past about the PEG. I had a much improved final 18 months with my husband. He put on weight, pressure sores cleared up and never returned, feeding was no longer a struggle, no more choking ( although I was told he could choke on regurgitated food) & we were able to go out, which we did until 3 weeks before he died very peacefully without a chest infection and not on any medication. He could only communicate by moving his thumb up or down, minute movements but he could make his wishes known. He decided when he had had enough by touching the peg as I fed him with small movements of his thumb and putting his thumb up a lint bit when I & the GP asked him if he had had enough & when the GP asked him if he realised he would be dead within 2 weeks without food or water He died peacefully 10 days after I stopped feeding him, at his request and GPs agreement. I still did mouth care, spraying with water a mouth freshener. He went to sleep when we were listening to the Archers together and never woke up, 6 years ago this month. I was lucky in that Colin made the decision to have the PEG and to stop feeding. His thumb only moved very slightly but by answering yes & no questions we could tell he understood every word we said. You are going through an awful time together & I hope you make the decision that’s best for your husband. I was very fortunate in that Colin was able to make the most important decision of his life himself just with the tiniest of movement. Thinking of you as you make a difficult decision.
The old bag has had a peg for years and it has been the best thing for her. The professional idiots (medics) keep talking end of life but they do not spend time with her, so they have no understanding of life. This means they have no real knowledge of people and their real life needs. Only close people understand the best things to do.
Dear Angel, it’s important to know his wishes regarding the PEG. Ask him to squeeze your hand if he agrees to it after it’s been explained carefully. My husband wanted it done and it did give him 3 years of a reasonably good life. Now he is being kept alive through it in the nursing home though he is bed bound. But it was his decision and neither of us regretted it. I wish you the very best in your difficult situation.
I am so sorry you find yourself in this situation. When your husband decided to have a DNR put in place did he give any indication as to what treatment options he was in favour of ? You say he has previously been referred for a PEG. Was that with his agreement?
I was very lucky in that our Community matron made us have the hardest conversation ever when she put together a Advanced Decision to Refuse (ADR) treatment. It was heartbreaking at the time but when Mum neared the end it made things much easier. I know it's too late for you to have that conversation but maybe someone else will read this and find it useful.
Whatever decision you make, know that you have made it wanting what is best for your husband in the situation he is in. xxx
it’s a difficult one. My MIL recently went through this before she died but in her case she’d made her wishes clear right before her illness, she had PSP which is an extremely rare disease and does have some similarities to CBD. My mum is about to reach that stage too, (she has vascular dementia) and we have discussed between the family how we will handle this-again in her case she will not have a PEG.
This will be hard to read and I don’t mean to upset you but you say that your husband isn’t at the end of his life, Whilst I’m not there I would question whether this is the case. Typically when someone is nearing the end of their life they sleep more and become unable to eat and drink, this signals that the body is starting to shut down. A PEG is quite invasive and yes can cause infections and other issues, the question you need to ask yourself is whether it will ultimately improve your husband’s quality of life or will it prolong any suffering.
I would suggest that you have a further conversation with the doctors and find out whether their objection to the PEG is purely on the basis of the risks or are they trying to tell you something else. Get all the facts you can and take as long as you need to decide, ultimately there are no easy answers.
Realise this may not be what you want to hear hence you must seek advise from the experts.
This is an old argument and I am surprised you have not seen some of the discussions. Some people put it simplistically as quality of life over quantity of life but it’s more complicated than that and the wishes of the patient should be paramount. Do you have a peg and quantity of life where your loved one is unable to do anything for themselves, is incontinent, cannot speak, cannot sit up is almost a well fed vegetable with absolutely no chance of remission for a long time or do you have no peg which puts enormous strain on the carer in preparing and giving food and drink (can take two hours to feed alone) and watching them starve after the throat stops working but reduces their time when the body is shutting down. Is life sacred or should your loved one have some say. My wife has been adamant that she should not have a peg and has reached the stage where the throat is almost no functioning but she has been conscious of and participating in family life up until this time - it is now up to me to see her wishes are carried out and I cannot tell you how hard that is. There is much more you can say but I will finish with - it must be about what the patient wants not what you want - please think carefully. Alan
My husband died 9 weeks ago from PSP. He did not have or want a PEG. For the last few weeks of his life, he became very sleepy and uninterested in eating and drinking his puréed food and thickened drinks. He was struggling to swallow and even to open or then close his mouth. It was a big relief when his GP said to forget trying to get his meds, even in liquid form, into him. Then the district nurse who visited daily , reassured me that his body was beginning to close down and he would not be suffering from thirst or hunger. He had just one injection of pain relief on the Wednesday as he was a bit fidgety and maybe, a bit anxious and his mouth was moistened. He fell into a sleep the next day and spent his last night in the hospice where I could just focus on being his wife again, after being a full time carer for at least two years. He died very calmly late on the Saturday afternoon with my daughter and I by his side and his beloved jazz music playing. The staff were wonderful and we both felt a huge sense of relief that he was no longer suffering from this horrifying disease. The grieving process now for me is very “ up and down” and misunderstood by many but our daughter and myself feel we must continue to fight for real acknowledgment and learning amongst health professionals about PSP and other rare degenerative neurological diseases. We have learnt so much and had to be so strong in almost constantly explaining what PSP is in medical settings. I’ve fought many battles as my husband’s advocate with the help of our amazing daughter!
Just focus now on showing your love and being there for Terry. That ( and taking care of yourself ) is all that really matters. XX
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