Hi, my dad's deteriorated particularly rapidly in the last few weeks and in the last few days has gone on a rollercoaster ride suddenly downhill. He can no longer communicate at all (before we would occasionally get a word or two, and he could give an almost imperceptible nod or shake), he writhes in pain if we try to move him in bed to wash him/change the pad he wears for faeces, he can sometimes open his eyes but cannot really move them now, it is almost impossible to get any food/medications down him, and a real struggle to get a few ml of fluid in. He's also developed a horrible alarming sounding watery rattle in his lungs with every breath.
Doctor has prescribed morphine & liquid antibiotic in case pain when he is moved is due to an infection.
His rapid decline makes us suspect he may be in the final short spell of this disease, and we really do hope he doesn't suffer for much longer- the disease has been the most cruel illness imagineable and what he's gone through over the last 18 months or so is utterly, utterly, horrific.
I totally understand how variable the disease is, both in the pattern of symptoms exhibited throughout the months of decline, and in the final days, but does this stage sound familiar to those of you who have cared for, and lost, someone to PSP? If so, it would be good to hear your experiences, to help us try to predict what may happen next, and how long it will take until he is finally at peace.
Thanks all.
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Blether
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I'm very sorry, but if your father isn't getting any fluid, he does not have much time, a few days only, and you should be prepared to say goodbye. The doctor should be talking to you about this, of course. Love and peace to you and your family, Easterncedar
Unfortunately yes. Talk to your doctor though, he should have a much better idea. I know when Steve got to the final stage, the District Nurse took one look at him and called me to one side. It took four days from then, but he hadn't really eaten or drank anything for several weeks.
Hello. What I was reminded of with your description was the rattley breathing you described. This started with my Dad about a week and a half before he died and for the last week I imagine he was in a coma. The hospice nurse gave him liquid morphine, which I guess works even though you can't swallow and this did seem to clear up the airways as the rattling stopped. I often go over the last days again and again trying to figure out when he said his last words and when he seemed to know we were there or not. It's hard to know what they are feeling. The hospice says someone can hear until the end, but it just feels like they are gone much before death comes. It's all very hard and still haunts me. My Dad died in his home on January 1st. and although he had been receiving 24 hour care for the last 17 months, I wasn't expecting his death. He still swallowed clear liquids and was expecting this would be the next phase before he was at the end. All of a sudden it was like his body gave out.
I agree that no fluids means your poor dad wont be able to hold on for much longer. All this should be explained to you so ask the questions. You and your family need to know. God bless. Marie
My prayers are with you and your family right now. I lost my husband just a month ago, so I understand your conflicted emotions now. I believe you know the answer to your question; just listen to your gut... and to him. Give him permission to move on, and don't be afraid, be strong for him. Sending hugs and courage.
My father in law died 2 days ago from this horrible disease, and yes, your loved one does sound like he is nearing the end. Depending on your Dad's wishes, it might be wise to withdraw the antibiotics, continue the Morphine, and add some Ativan to help him to be relaxed and comfortable. I am so sorry.
So sorry. But it does sound like the end is near. My wife came down with aspiration pneumonia and antibiotics could not relieve the mass congestion in the right lung. So after 2 days in the hospital, we stopped all IV fluids and they only gave her morphine and ativan to keep her comfortable. She was diagnosed as being in a coma her last 2 days. Her blood oxygen rate was staying under 90. Once it fell below 80, it was about 2 hours later that she passed. Very peaceful passing.
Doc was out again today and agreed it looks like we are now in the end of life phase- but explained cannot say how long - could be v quick, or some people surprise them and go on longer or even rebound a bit. aUnderstand wh as a doc they are loathed to give a time estimate,, but I get feeling is likely to be a couple days at most. I hope for Dad's sake this is quick. He's suffered long and hard enough with this cruel disease.
Doc prescribed intravenous morphine, midazolam, and hyoscine. District nurses have just been out and injected these into him so hopefully he'll be as comfortable as possible in the meantime.
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