Life Support Issues/Ready to let my father go...
QUESTION: I visited my father in a care home for his birthday on Sunday. He has dementia and advanced prostate cancer (untreated).and is now totally incontinent . having little mobility.
I found him looking very disorientated, having roused from a sleep thats not unusual but he seemed almost child like , glassy eyed and congested in his nose (he manged to blow this out unaided ) He has had very little appetite and even neglected his tea and biscuits (very un dad like )
Having read his cards to him and holding his hand a while I affirmed how much I love him, he thanked me and kissed my hand (never done that in my life !! ) I felt this is the beginning of the end .
the GP has requested blood tests but I watched my mum die last April and this is so similar , but she had said all she wanted to everyone, my sisters (2) see dad very rarely should I tell them to visit asap to help him see he can leave us to it now and he no longer needs to hang on ?? or am I acting prematurely ?
Yes it is time for them to come to say goodbye. Better too early than too late. They too may have an opportunity to have a sweet unexpected interchange with their Dad.
Patients with Dementia are approaching the end of life when they lose weight (10% of their body weight in 6 months) and/or they are having recurrent infections. The expected process is gradual weight loss and they become so thin, they cannot recover when they have an infection. They can die from other causes also but this is the usual way for those who have degenerative changes of their brain. His loss of appetite is telling. Most patients are weaker and many cannot get out of bed.
It can be helpful to have a conversation with his doctor about his medical options. Many families decide only to treat symptoms that indicate discomfort and to stop taking blood and looking for what may be wrong. Dementia is a terminal disease and the research has shown that artificial feeding and hydration and intravenous antibiotics neither prolongs life nor adds comfort.
We have no control over the length of time it will take before he dies. We have a lot of control over how we spend that time with him. Yes, your sisters should come to visit. I hope all goes well for him and your family. One of the best gifts we can give a loved one is allowing them to have a peaceful and comfortable death.
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QUESTION: So you agree they should not tube feed him, nor give anything but pain relief ? we have no pow , courts agreed we can act in his best interest , hope the gp is as compassionate .
Yes the research is clear that there is no real benefit to tube feeding. The Alzheimer's association recommends a program of careful hand feeding with foods the patient will enjoy. The Alzheimers association has their recommendations for end stage dementia patients on their web site.
Having hospice staff visit him could be a help. They are better at identifying pain and treating it than most providers. In the US, hospice comes into the nursing facility.
In speaking with his doctor, it may be helpful to say that you would not want him to receive CPR (cardiopulmonary resuscitation). At this late stage he is not likely to survive it and more likely to have distress during the procedure. It can be helpful to say that you want the doctor to do everything possible to make sure he stays comfortable. That you would not want him to receive treatments and medications that don't have a goal of promoting comfort. If you can get hospice, they can help you in evaluating any decisions and in communicating your wishes. Its helpful to say that you acknowledge your father is declining and a viable goal for him is to allow him to die comfortably in his facility rather than to be moved to a hospital.