My dad has had PSP for about 7 years now and it certainly now feels like he's entering his last days/weeks. One thing we're all very confused about is that he seems to be almost permanently sleeping or semi conscious. He does occasionally open his eyes, he's actually lost all ability to communicate using his hands or his eyes. He doesn't even really acknowledge any of us anymore.
My questions are:
Is this typical?
Is he actually entering his last days or could this go on for a while?
Is the semi-conscious state typical?
Written by
Ado78
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Hi. Welcome. No one wants to be on this site but you will find a great deal of support from it. I once had it explained to me that when one has a progressive disease the actual effort of living becomes hard work so sleep is inevitable. Your Dad has had PSP a long time so his life may be coming to the end but everyone is different so there is no set time frame. He may no longer be able to communicate with you but he will be aware that you are around and I am sure that he is grateful for your company. Are you in the UK or elsewhere? It would probably be a good idea to get in touch with your Dad's doctor and asking advice and he/she may well suggest that you have hospice input as the staff from the hospice are so knowledgeable and supportive and will give you the help that you need. Take care. My love and thoughts are with you and your family. AliBee xx
Hi, as AliBee said, your dad is probably very aware of what is going on around him. Towards the end, my husband was in a similar state but could move his thumb enough to make it known he understood everything we said. Several times I had to remind friends and relations to be very careful what they said within his earshot and to speak to him normally. After several days of very little response, my son reminded him of something funny that had happened years before, very unexpectedly and a big welcome surprise to us, my husband did a weak, but very recognisable funny little humming laugh he would do before he entered this state. People say the hearing is the last thing to go and my husband proved it.Very best wishes at this difficult time.
My Husband’s circumstances were probably different from your dad as he had decided he didn’t want to live any more. He was being PEG fed (his choice) but after 10 months decided he had had enough and managed to let me know by hooking his thumb around the tube and when I asked him if he was trying to stop me feeding him, he indicated yes with his thumb. This was confirmed by the GP asking him questions including, “Do you understand you will die in about 2 weeks if you don’t have food or water”. He gradually became unresponsive and died very peacefully 11 days later. It was only 2 days before he died that he became totally unresponsive.
If he had continued to be fed he could have lived a lot longer as he didn’t have any other illnesses or infections and his heart was very strong. He wasn’t on any medication. I continued to give him mouth care and the GP said even spraying his mouth with a little water would prolong his life but it didn’t and I couldn’t let thick saliva build up so used a fine spray of water and breath freshener and a suction pump. I hope your dad leaves as peacefully when the time comes.
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