With my sister, I am meeting the Hospital Consultant this morning regarding my brother in law Victor. We expect it will be recommended that medical interventions are withdrawn and that he is just ‘made confortable’ inhis dying days. He has been fed through a PEG for many years but that has finally failed. He is very poorly in many ways.
I wonder if any readers have witnessed a PSP sufferer as they slip away (if they are that fortunate)? Is there any advice they can give? Should we seek sedation to keep him calm? I’m worried that his total inability to communicate will cause him particular distress as his body fights for life. Thank you.
Melvyn
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MelvynS
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Melvyn I'm so sorry you are having to go through this. I lost my mum just over 3 weeks ago now to this vile disease. Her last few days were spent in a hospice who showed her care love dignity and respect. She was put on a morphine driver for the pain and a sedative was added 36hours before she passed. She was very calm and definately not in pain. I'm not going to lie and say it was easy for me and my family who were with her until the end. It was the most traumatic thing I have ever been through watching her take her last few breaths. The peace I get is knowing that she is in a better place and free from PSP. I wish you much love and strength for the days to come. ❤
Dear Careenh, Thank you so much for your prompt and very helpful reply. The meeting with the medical team went ahead, and my sister and I felt reassured by their approach. They are clearly going to keep a close watch on Victor over coming days and be there when intervention is necessary to ease Victors gradual decline. I am very impressed by doctors, nurses and other staff who we have come into contact with at Charing Cross hospital. I do hope you are able to put your own grief down in coming days and weeks. Those of us who have had parents who gave us good memories are fortunate indeed, and of course losing them is painful. But I hope the pain you are obviously still feeling will soon begin to fade. Melvyn
Melvyn, the last 11 days of my husband’s life were the the most peaceful he had had in over 6 years. Indicating with his thumb, he requested I stop giving him food or water through his PEG. He was at home and the hospice provided morphine if he needed it. He didn’t. Unlike your mother in law, he could still communicate by moving his thumb and when asked if he needed pain relief, he indicated “No”. He slipped away peacefully and I felt I had lost him 2 days before his heart stopped when he no longer gave any indication that he could hear me. As a family we spoke to him until the end. He had been Cheyne-Stoke breathing for a few days so we thought he had taken his last breathe on many occasions but he had no infections, wasn’t on any medication and was peaceful.
NannaB, my son went the same way.....he requested to not be fed (PEG) and hospice stopped his water after a few days. We never used any of the medications that Hospice ordered. My son also could use his thumb.
I never thanked you for sharing with me about your grandson who plays an instrument with a band. Your sharing was comforting for me.
Do stroke Victor, if only his arm or hand. Tell him how much you appreciated that he was your brother-in-law and that he married into the family. Give him as much verbal reassurances about his life as you can.................they hear, and I think it can only be reassuring.
Dear enjoysalud, Thank you so much for your very thoughtful reply. These things had not occurred to me but I am indeed doing as you suggest. For so many years it has been all about the mechanical things of keeping Victor comfortable and engaged. I am so sorry you lost your son, but he clearly had a very caring and thoughtful mother - so many people go through life without that gift. I hope you have been able to find peace. All best wishes, Melvyn
Ben, my husband passed away in May, he died peacefully at home with the family around him. He had a syringe driver fitted the night before he died as I was concerned he might be in pain as his body was so rigid and I couldn't bare the thought of him suffering any pain after all he had been through. It was a very sad time for us all but he had indicated he was ready to go, he was tired and worn out by this awful disease. Miss him terribly but wouldn't wish him back to the life he had to live, that was even more terrible.
Dear Kate. Thank you so much for your reply. My sister is coping well, having nursed Victor for about 10 years as the disease has progressed. It is indeed a terrible disease, but Victor has been very calm since the PEG was disconnected and he was in a Hospital bed, untroubled by all the shifting from bed to chair and back again that he has had to go through every few hours, day in day out for so many years. I am hoping he is at peace. I do so hope that you are also finding peace, in spite of being without your husband. Love Melvyn xx
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