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"We are afraid that one day he won't answer the phone and will pass away. Any ideas why he won't make the appointment and what can we possibly do??"
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Originally Posted by rere900
We check on him all the time! We have suggested that he move to NC with me and my husband because we have two extra bedrooms with no kids, we even suggested that he move to a senior home that have other people his age and on-call nurses, etc. He always says no and even gets mad when we keep talking about it. It's not that we can't go up there to help him, but just like this morning when I called and asked him if he made his appointment, he said no because he has been trying to work on his taxes. I asked him for the doctors # and he got upset with me and said "Don't worry about it." Now if I drive up there he is not going to give me the number. He will be upset that I came and trying to intrude. Trust me! The same thing happened a year ago, when he told my sister first, that he had kidney failure. He refused to go to the doctor for weeks! Finally while I was at his house one day, his doctor called with his lab results and ordered him to the Emergency Room immediately because his creatine level was life threatening. He got upset with me then because I got concerned and he was cool as a cucumber like nothing was wrong. So, it's like he tells us he is sick then gets mad when we try to help!
It's hard now and it won't get easier as time goes by. Talk to his hospital. Tell them what you're experiencing. It's likely they're quite familiar with the circumstances you and your sister find yourselves in. They probably have or at least know of services that can help you understand what's happening and can suggest ways to deal with it. Literally millions of people are in situations like yours so there's no shortage of available information and resources. For the family's sake, start now to educate yourself for this stage of your dad's life and this stage of your life. You can only benefit.
However, he has been on dialysis for a year and the OP says that he is in failing health. I would not be surprised if it turns out that her father has untreated depression or has early dementia or early Alzheimer's or other cognitive issues due to his failing health. This is especially true if her father has always taken care of his health in the past and has always made doctor's appointments when they were necessary.
Or, along with any of this, he's just tired of it all and quitting. It's been known to happen.
Dialysis is brutal. It takes the starch out of the toughest people, and even those with the best, most positive attitudes. He might just be checking out.
Dad is an adult. Adults get to make their own decisions. Leave him alone about this. It's his decision to make. Do you want him butting in your life telling you how to raise your kids or how to make health decisions for your family?
Amen to this. I could not agree more.
Don't misunderstand, their concern is natural, it is totally normal that this situation frustrates them and they want what is best for him. HOWEVER, I am very big on personal sovereignty, a person--even one with dementia--being in charge of their own lives and being let alone if that's what they want. If they're trying to drive and are crashing into other people, OK, otherwise let them be. I even disagree with the idea of people being put in nursing homes against their will, if they want to die at home versus live 6 months longer cooped up in a nursing home, that should be their choice. Anything else is legalized kidnapping.
Don't misunderstand, their concern is natural, it is totally normal that this situation frustrates them and they want what is best for him. HOWEVER, I am very big on personal sovereignty, a person--even one with dementia--being in charge of their own lives and being let alone if that's what they want. If they're trying to drive and are crashing into other people, OK, otherwise let them be. I even disagree with the idea of people being put in nursing homes against their will, if they want to die at home versus live 6 months longer cooped up in a nursing home, that should be their choice. Anything else is legalized kidnapping.
Do you feel the same way about babies? Because many people with advanced dementia have basically the same cognitive abilities and ability to care for themselves as babies.
Don't misunderstand, their concern is natural, it is totally normal that this situation frustrates them and they want what is best for him. HOWEVER, I am very big on personal sovereignty, a person--even one with dementia--being in charge of their own lives and being let alone if that's what they want. If they're trying to drive and are crashing into other people, OK, otherwise let them be. I even disagree with the idea of people being put in nursing homes against their will, if they want to die at home versus live 6 months longer cooped up in anursing home, that should be their choice. Anything else is legalized kidnapping.
So who is caring for this person with dementia who can not drive, can not cook, can not live safely by themselves? Where is the caregivers "personal sovereignty"?
In my caregivers group there are loved ones who need to spoon fed every morsel of food, need their diapers changed, need constant medical attention 24 hours or each and every day. Even if they have "sound minds" why does their "personal sovereignty" over rule the "personal sovereignty" of their spouses and children?
Quote:
Originally Posted by hertfordshire
Do you feel the same way about babies? Because many people with advanced dementia have basically the same cognitive abilities and ability to care for themselves as babies.
Good point.
My husband in many ways is functioning at the level of a five to seven year old child and he is considered high functioning among his peers with "mild dementia" and mild cognitive damage. Now, if a 64 year old man is functioning like a preschool or young elementary school child and he has early or mild dementia, just imagine the level of someone with moderate or severe disabilities?
Shyguy, If you have children, how much "personal sovereignty" did you give them as six month old babies or as two year olds or as five year olds? Or did you just leave them home alone to care for themselves because that they needed to be in charge of their own lives?
Last edited by germaine2626; 04-13-2016 at 10:30 AM..
I think the trick here is for the would-be dementia victim to make these decisions, and spell them out legally, before their mental capacities have left them. So at this point you have a decision which IS made with "sound mind and body." Their mental capacity once things have set in becomes irrelevant at that point.
So, if someone has laid out in legal terms, well before dementia have fully set in, that they wish to be left alone on their place, and that whatever happens to them so be it, then you go with it, no matter the results. I'm not sure that is the best thing for them, and the ending would sure be awful, but if they decide in advance while they're still of sound mind that they'd rather have an accident that kills them (wonder out into the cold and can't find their way back in) than to live longer in a hospital, you honor it. If this person is married and their spouse isn't equipped to give them the best care, but they specify they'll take that chance and that it's that important to them to not have their spouse have to visit them in a hospital vs being at home, you honor it.
Regardless, in this case, we're not talking about someone with this situation. We're talking about someone who is not suffering from dementia. Their decision may be stupid, but it's THEIR DECISION. That is no different than me, say, swimming where there are no lifeguards or going handgliding without proper equipment and training.
I think the trick here is for the would-be dementia victim to make these decisions, and spell them out legally, before their mental capacities have left them. So at this point you have a decision which IS made with "sound mind and body." Their mental capacity once things have set in becomes irrelevant at that point.
So, if someone has laid out in legal terms, well before dementia have fully set in, that they wish to be left alone on their place, and that whatever happens to them so be it, then you go with it, no matter the results. I'm not sure that is the best thing for them, and the ending would sure be awful, but if they decide in advance while they're still of sound mind that they'd rather have an accident that kills them (wonder out into the cold and can't find their way back in) than to live longer in a hospital, you honor it. If this person is married and their spouse isn't equipped to give them the best care, but they specify they'll take that chance and that it's that important to them to not have their spouse have to visit them in a hospital vs being at home, you honor it.
The problem with that is that they make these decisions while they still have their full mental capacities, and really have no way of knowing how bad it will get for them. So they don't have the ability to change their mind later based on their specific circumstances. At some point, they have to entrust someone to make decisions for them.
Right now the dad in the situation has his mental capacities. He should be allowed to make his own decisions. Nobody can force him to go to the doctor, nor should they.
Right now the dad in the situation has his mental capacities. He should be allowed to make his own decisions. Nobody can force him to go to the doctor, nor should they.
However, you can not just assume that a man in his 70s with serious health issues and deteriorating overall health has his full mental capacities. Serious depression, even leading to death, is greatly underdiagnosed in the elderly. In addition, it is quite common for the elderly to have cognitive decline for several years before it is first diagnosed.
Yes, if this was a healthy person then his spouse & friends could just let him die, but IMHO he probably is NOT thinking clearly.
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